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Posted

For those who have used Barton, is it intensive enough for the most severely struggling readers?

 

DS, 11 yrs old, is dx'ed with dyslexia and some other learning disabilities. He is progressing, but slowly. He absolutely needs Tier 3 level intervention, but we are running out of time to keep getting it wrong, and I am a little bit terrified to still be in charge of this.

 

On the flip side, I am equally stressed over the thought of paying for private tutoring, or of going to the public schools for intervention. In Texas, it is all or nothing -- if we want their services, he will have to be enrolled full time. Which we will absolutely do if it seems they can truly help him....but starting the whole thing just stresses me out.

 

So...Barton. It sounds good. It sounds ideal. How soon would I know if it isn't working...? Is it easy to learn to use? Once you start doing it, is it easy to follow? Has anyone here successfully used it with a child needing Tier 3 intervention? Is it really as good as it says it is??

 

Any other thoughts? I thought we were making progress, and we were....but not as fast as the current carrying him further away from where he should be. :(

Posted (edited)

Hugs!  I know this can be a very frustrating and even scary/exhausting process, trying to find what works as you feel time passing you by.  BTDT.  Hang in there.   :)

 

To answer your questions:

  1. As Lecka said, yes Barton is intense intervention.
  2. Yes, a layman with no training can use it:
    • It is clearly scripted out with DVDs and work pages to train a layman to use.
    • There is a lot of support on the website for tutors.
    • It does not expect a tutor to have ANY background knowledge in tutoring a child with dyslexia.
    • Susan Barton herself will respond if you run into trouble and need that extra level of help.
    • There are lots of additional materials you can use to support the Barton system.  One thing that has been great here are the Spelling Success card games based off of the Barton program.  They were created by an independent Barton tutor so you have to purchase them separately but they have been great for reinforcement and review and even catching gaps.
  3. Is it as good as they say it is?  That depends on the child, the tutor, underlying challenges and strengths of the student, consistency of the tutoring, and a whole host of other things.  It CAN be as good as they say.  It can be absolutely amazing.  It can also be a bad fit.  With a child with learning challenges it will be hard to know without trying out the program.  At least with Barton it is DESIGNED to be used with a dyslexic student so the odds are much better with Barton that it will be a good fit than a program designed with a neurotypical student in mind.
  4. When will you know if it is working?  Again, that depends.  The program starts with very basic building blocks of reading.  For some students they never really mastered these building blocks, basic building blocks that typically don't even need to be taught to most NT kids.  They just pick it up on their own.  Level 1 is so basic it may seem ridiculous to spend money on.  It is very short, too.  I was shocked and honestly felt a bit cheated when I opened that box.  However, Level 1 turned out to be HUGE for my DD.  She needed what Level 1 provided and I had no clue those pieces were missing in the first place.  With every single level she has made huge leaps forward.  It absolutely has been obvious that progress is being made.  For my DS?  He has different underlying strengths and weaknesses.  The program has not been as good a fit for him.
  5. Even if the program works, please don't expect reading to be easy or the lessons to go smoothly.  As my DD puts it, the lessons are hard because her brain doesn't want to do what it needs to do to learn to read because it is HARD to do those things.  It takes time for her brain to learn.  She gets that now.  We both do.  
  6. Can you just keep moving through the program and your child miraculously functions like an NT kid?  No.  You have to go at the pace your child can succeed and it will be different for different levels and lessons.  I made the mistake when we first started of just plowing through, thinking we could just keep going and it would all gel and suddenly she would be reading and spelling and writing just fine, no issues.  It was naive for me to think that and harmful to keep pushing. We ran into a wall with Level 4.  For most people it is the hardest level.  It certainly was for us.  I will spare you the boring details but basically DD had to repeat most of that level 3 times before she could successfully move forward.  It took 2 years (most people only need a few months to a year, not 2 years :) ).  Once we were on the other side of that level, though, she again was making huge leaps forward and what she learned with that level provided critical pieces to the puzzle for her.
  7. Some people think this program is about memorizing rules.  It isn't.  We both had to realize that what makes the program work best is doing the lessons until the application is automatic.  Memorizing the rules is useless.  It is the application that is critical.  If that means slowing down, repeating lessons, doing a lot of review, we do it.  And things have worked so much better since then.  Level 5 was a breeze compared to Level 4 (easier level anyway, but now we know when to stop and review, when to slow down, etc.).  
  8. DD doesn't LIKE the lessons but she looks forward to them now because she realized they really are helping her when NOTHING else did.  She loves that reading/writing/spelling have all improved tremendously since she started this program.

FWIW, my daughter was still barely able to decode Clifford books in 5th grade (and she had already repeated a grade so technically she should have been in 6th).  Reading was so painfully slow for her.  Spelling was a nightmare.  We started Barton in mid-6th grade.  By mid-7th, when she was roughly halfway through Barton Level 3, she got the book Divergent for Christmas (thanks to Lecka's recommendation since she had noticed that it seemed to have easier words to decode but was more advanced in story content).  DD, for the first time ever in her life, voluntarily sat reading a chapter book.  I get tears in my eyes when I remember that Christmas.  Mom nudged me and pointed quietly to a corner and there was DD, reading.  She read the whole book, cover to cover.  Did she still have decoding and fluency issues?  Yes.  But at that point she could decode enough words to make the book make sense and she wasn't wearing herself out trying.  I will be eternally grateful to Barton.  Has it been easy?  No.  Barton doesn't magically fix a dyslexic student and turn them into a neurotypical student.  But all the blood sweat and tears we have put into Barton have been absolutely worth it.  

 

Edited by OneStepAtATime
  • Like 4
Posted

If you are considering Barton you really need to give your child the student screening and you also need to pass the tutor screening.  This is not to test knowledge but to find out if you and your student can hear the sounds well enough to use this program.  If your student does not pass the screening, don't panic.  It just means he may need to step back to a program like Linda-Mood Bell's LiPS program first.  

 

When giving the screening I highly recommend the following:

1.  You and your student need to be well rested.

2.  Try to make sure you cannot be interrupted.

3.  Do it someplace quiet, without a lot of ambient noise.

4.  Don't do it right before you have to rush out the door.  Pick a day when you have some time to devote to it (the screening doesn't take that long but if you rush it you may negatively affect the results.)

 

https://bartonreading.com/tutors/#ts

 

https://bartonreading.com/students/#ss

  • Like 2
Posted

Something else I thought I would mention is that Barton is a lot cheaper over the long haul than hiring a specialized tutor but if you think at some point you would prefer a tutor and want to stay with Barton you can contact Susan Barton and she will send you a list of certified tutors.  Some will even do Skype lessons.

 

Also, for cost savings, you can usually sell a previous level for nearly the price you paid.  Use that money to pay for the next level.  Just make sure that you spend the $10 to purchase an extra set of letter tiles for each Level after Level 1.  All additional levels use the previous Level's tiles (except for Level 1) and add to them with additional tiles provided with the new level.  When you sell a previous level the person purchasing will need a set of tiles for themselves.

 

There IS an app for virtual tiles but I don't recommend using it before Level 4.  A lot of kids need the tactile experience of moving the real tiles.

  • Like 1
Posted (edited)

We visited a really swanky, super $$$ reading tutor practice last week (like $80 an hour $$$!!) and I thought what Barton does is BETTER than what they do.  It's more organized, more multi-sensory, more consistent.  They actually use a lot of workbooks, which surprised me.  

 

When you say he's severe but you haven't tried Barton yet, this seems kind of contradictory to me, kwim?  Like I could totally imagine someone so severe that even Barton was excruciatingly hard.  We've had some people on the board who had to work multiple hours a day to get progress that other people get much more easily.  So it can happen.  But you haven't even tried it yet to know if that will be the case, kwim?  

 

My ds has speech problems that made teaching basic phonological processing much more complex, and I had to add things to LIPS + Barton, yes.  I think there are probably some kids who need more practice in syllabication who might benefit from adding Rewards to Barton.  Now that I've seen Rewards in person, I'm like hey, that would be a nice thing.  Not ESSENTIAL, but a nice thing. But Barton is going to get you 80% of the way there on most kids.  And you don't even know that he'll need more.  You might get into Barton and have it be an epiphany and just enough!  

 

And if you're like oh, we need more work on sequencing or working memory or something Barton isn't really trying to target, you can make that happen.  But Barton is some seriously thorough bones to start with.  *I* don't think the private tutors around here are better.  It's just that they get it done. The only thing that really matters is that it gets done, no matter who does it.

 

And yes, Barton might speed up your progress giving you more tools.  You could make it a serious focus.  You could spend an hour a day really working, working hard, and do homework (drill for fluency, RAN/RAS work, working memory games, etc.) another hour a day.  It would give you more tools to work more.  

Edited by OhElizabeth
  • Like 2
Posted

Something else I thought I would mention is that Barton is a lot cheaper over the long haul than hiring a specialized tutor but if you think at some point you would prefer a tutor and want to stay with Barton you can contact Susan Barton and she will send you a list of certified tutors. Some will even do Skype lessons.

 

Also, for cost savings, you can usually sell a previous level for nearly the price you paid. Use that money to pay for the next level. Just make sure that you spend the $10 to purchase an extra set of letter tiles for each Level after Level 1. All additional levels use the previous Level's tiles (except for Level 1) and add to them with additional tiles provided with the new level. When you sell a previous level the person purchasing will need a set of tiles for themselves.

 

There IS an app for virtual tiles but I don't recommend using it before Level 4. A lot of kids need the tactile experience of moving the real tiles.

Thank you so much for your helpful, thorough replies! I appreciate it.

 

Yes, I will definitely do the screenings for myself and my son, I just wanted to first ask if Barton would actually meet our needs before even doing that. We have already been on a long road with all of this, and I know it is a marathon, not a sprint. I am not expecting a miracle, just a program that will work.

 

A little background, since I didn't mention any of this in the OP: he was dx'ed in 2012, while we were living in Brazil, and in Jan 2013 we started using the materials suggested to us at that time. We have been plugging along, and he has made what seem like great strides -- when he was first dx'ed, he couldn't hear the difference between the different vowel sounds, neither in isolation or inside a word. He went through Earobics software, and one of the games was to sort the eggs. The eggs were blank, but they would vocalize a sound and one sound needed to be placed on one side, the other sound on the other side. For months, he couldn't progress past the easiest level on that.

 

Well, we had him reevaluated last month, and got the results yesterday, which prompted my post. Turns out, even though he has moved from a pre PreK level to a mid first grade level (in the 3.5 years we have been working), his age equivalency is that of a 6 yr old...when he was first tested, it was that of a 4 yr old. How the ages and grade levels seem not to line up I don't know, but there it is. So he is now more chronological years behind than when we started, despite the progress I thought we have been making.

 

This is why I asked how soon I will know when it's working....I thought what we were doing was working. He can now read (with breaks, taking turns, and in short chunks only) Level 1 and some Level 2 Scholastic readers. Not the whole book in one sitting, and not without a few reminders (th- always trips him up, for instance, no matter how many times he sees it). But, he can, for the most part, decode those, and he is gaining fluency with them. But he is also further behind now than he was when we started, so I am hoping Barton might at least let us not keep falling further behind.

 

I know, and he knows, it will keep being hard work. We're all too used to that by now. :) If it will work, though....it will be worth it.

  • Like 1
Posted

Have you had his hearing checked through an audiologist?  

 

And when you had him reevaluated, who did the evals and what tests did they run?

 

I will be honest, one of the reasons Barton is not working as well for DS as it is for DD is that DS glitches on some sounds.  DD struggled with internalizing the rules but once we slowed down, incorporated lots of review, etc. the program has worked brilliantly for her.  It just takes a long time to get through the lessons.  We usually do a lesson over 3 days now.  In the beginning she needed as much as 2-3 weeks to get through a lesson.  It was a slog but she was getting it.  

 

DS, on the other hand, grasped the rules and the application immediately, way faster than DD, and internalized everything quite quickly.  I was told that his struggles might have been because I moved him too quickly through Barton Level 1 and 2 but I know that is not the case.  He got it.  Immediately.  However, he still glitches on certain sounds and it made the whole program very frustrating for him.  

 

He did LiPS because he couldn't pass the screening initially but my mother was the one implementing it and for various reasons only did it sporadically and without much depth.  It helped but not enough.  He did pass the screening the second time and breezed through Level 1 and 2 with ease.  Level 3 was problematic.  He would grasp what the lesson was teaching right away but he sometimes failed to hear sounds he was saying or reading.  He got really demoralized.  

 

Last summer I ended up putting him in a specialized tutoring center that uses Barton and a whole host of other programs.  It is several hours from home but it was worth it.  They are excellent at assessing a child and determining what blend of programs might work best.  They redid Barton Level 3 with him, alongside a LiPS type program, and it definitely helped.  The tutor in charge showed me that he would still periodically glitch on the sounds but she gave me a chart for him to refer to when sounds messed him up.  Barton was working but she showed me I needed to scaffold the sound glitches. I guess this would be sort of equivalent to scaffolding a dysgraphic student with their writing output?  

 

We are currently in the process of trying to get both kids assessed through an audiologist because I suspect DD has CAPD and DS still has those odd sound glitches, among other things.  

 

Anyway, I guess my point is that Barton might be great but definitely do the screening.  If he doesn't pass the screening I would be looking at seeking additional answers for his struggles and trying something like LiPS.  Dyslexia alone won't cause the issues you are seeing.  Honestly, it is the comorbid stuff that can really muck things up.

  • Like 1
Posted

We visited a really swanky, super $$$ reading tutor practice last week (like $80 an hour $$$!!) and I thought what Barton does is BETTER than what they do. It's more organized, more multi-sensory, more consistent. They actually use a lot of workbooks, which surprised me.

 

When you say he's severe but you haven't tried Barton yet, this seems kind of contradictory to me, kwim? Like I could totally imagine someone so severe that even Barton was excruciatingly hard. We've had some people on the board who had to work multiple hours a day to get progress that other people get much more easily. So it can happen. But you haven't even tried it yet to know if that will be the case, kwim?

 

My ds has speech problems that made teaching basic phonological processing much more complex, and I had to add things to LIPS + Barton, yes. I think there are probably some kids who need more practice in syllabication who might benefit from adding Rewards to Barton. Now that I've seen Rewards in person, I'm like hey, that would be a nice thing. Not ESSENTIAL, but a nice thing. But Barton is going to get you 80% of the way there on most kids. And you don't even know that he'll need more. You might get into Barton and have it be an epiphany and just enough!

 

And if you're like oh, we need more work on sequencing or working memory or something Barton isn't really trying to target, you can make that happen. But Barton is some seriously thorough bones to start with. *I* don't think the private tutors around here are better. It's just that they get it done. The only thing that really matters is that it gets done, no matter who does it.

 

And yes, Barton might speed up your progress giving you more tools. You could make it a serious focus. You could spend an hour a day really working, working hard, and do homework (drill for fluency, RAN/RAS work, working memory games, etc.) another hour a day. It would give you more tools to work more.

Thanks for this. I shared a tiny bit of his history when I replied to OneStepataTime, but to give a bit of a bigger picture, why I used the word severe when I haven't yet tried Barton....yesterday the psychologist who did his eval said his reading disability is the worst she has ever seen in a child his age. Four years ago when he was first diagnosed, his reading potential was described to us, tearfully, as a great big giant IF. If he learns to read....If he one day is able to....If. Not when. If. The Edu-Psych who did that eval is one of the most well respected in our very large metro area, and she held out to us options of audio books, text to speech software, speech to text software, a future of having schoolwork read to him, and someone to scribe for him. Indefinitely. Because he might not, ever, learn to read.

 

So...here we are four years later, and he can just as of this year (and really just as of the last few months) decode Level 1 and some Level 2 readers. Which has felt like a HUGE victory to me this year.....until I found out that the bleeping current of time is still fighting against us, and our swimming upstream has only resulted in a slightly stronger swimmer, further back down the river. Five years behind his same age peers, instead of three years behind. Which I knew...we have held him back grades already, so at 11.5 yrs old he will be starting a second year of 4th grade really, even if we call it 5th grade, even if it should really be 6th grade. He will be 12 in February. I just hadn't realized or thought about forward progress being....erased...by the passing of time, and here we are, so far from where we came, but now with even farther to go. So, I think the word severe, sadly, fits.

 

Why haven't we tried Barton yet? Well, the first two years we were in Brazil, and he wasn't even ready for it yet. We spent a solid year on phonemic awareness, just getting him able to even hear the differences in similar sounds. Unless I was pointing at my mouth, and him watching me say the sounds, he couldn't hear the difference in similar vowel sounds, or even similar consonants. We used to play a game where I would say a word and ask if it started with /m/ or /n/, or /p/ or /b/, and I would face him, point at my mouth with one finger from one hand while I said one, and one finger from the other hand while I said the other. Then I would say the word again, pointing at my mouth again, and ask again. With all of that (and he was 8 yrs old at this point), he had a less than 50% success rate when we started doing that. It took us a year to get to the point where we started working with the written symbols for the sounds.

 

Then when we started, we used what had been prescribed to us, and what we had ordered and had there in Brazil. We did a year of the first part of AAS, learning to segment words with even a blank tile or tapping on the table. We did letter sound Bingo, and sight word Bingo, and therapy games meant to improve his processing speed and working memory and a million other things, to get him ready for actual reading instruction, and again, that took about a year but by the end of the year he mostly remembered letter sounds and mostly knew what letter went with which sound, and mostly could identify it when asked in either direction (matching sound to letter, or letter to sound).

 

So then the third year we actually started with Spalding (Writing Road to Reading), which is what was prescribed to us. And we continued with AAS. And by the end of that year he was decoding simple three letter words, which felt enormous at that point and was the first glimmer he might not be illiterate forever. And then he was frustrated because it was so slow and repetitive and he wasn't gaining much, so we started IEW's PAL program, which isn't geared for dyslexics, but uses games, multi sensory approaches, incorporates AAS which he was doing well with or at least used to, and uses a mix of sight words and phonics and starts him off reading stuff, instead of just the sounds, which he desperately needed to maintain any kind of motivation to keep going. And so this year he did that, and moved through all the Bob books, and all the Spalding leveled readers we had bought way back in the beginning, and started on Scholastic/Step Into Reading type books, and here we are.

 

I thought what we were doing was working, because he is moving forward. But I found out that forward isn't always as forward as it seems, and he is actually moving at such a slow pace that he is further behind than he was despite the forward progress. A stronger swimmer, further downstream. So he won't drown, but he might never reach where we're aiming if we continue as we are. So now it is time for a change, or as you say, a different, and I hope a better, tool for us to use.

 

We are used to hard work, we have never spent less than half an hour, and usually more like an hour as his age/stamina can take, on his reading lessons and other remedial stuff to work on the other pieces of the puzzle. We keep working, and keep going, because there isn't a choice. After all of this, he is still in level one of AAS, because that is just where he is. He sets our pace, and we repeat, and stay there, and move forward and back and forward again as we need to. I know Barton won't magically cure that, but I hope it will be a more effective tool than what we have had so far. And I hope and pray it will be obvious to me if it isn't, because I don't know if I have wasted time the last few years and if we had been doing xyz different, would he be further. I don't want to mess that up again.

 

And yes, we will keep adding the other things we need for all the other puzzle pieces. I have pretty much always considered them as separate subjects. He has reading, and spelling/writing, and therapy games, and math, and history and science. And game time. And he gets read stories and comic books so that he keeps seeing the fun in reading. And we make him do his own reading (or at least attempt) in video games, so he sees the practical/needed side. And we do lots of little sessions, alternating hard work with fun stuff. He gets to kick my butt at chess, or battleship, or connect four, and then we move to the next hard thing. And then we play one of the many board games he made up, and then do the next hard thing. And so on.

 

I think my expectations are realistic, in other words. I just feel a little unnerved by the fact we are farther behind than we were, and feel the time ticking away, and want to make sure that whatever switch we make now is, hopefully, the right one. Or at least has a chance of being the right one -- anything less than Tier 3 will not help him. So if Barton wasn't really Tier 3, I didn't want to waste my time, his time, or our money, ya know?

 

I don't even expect him to one day be on grade level, I just hope one day he will stop sliding backwards. I would like if one day he can take notes in a class, or complete an in class worksheet, or write his own grocery list and then read it and go shopping from it and get the right things. Or be able to read street signs when he starts driving one day, so that he can navigate where he's going. Right now, most of that feels very far away.

  • Like 1
Posted

Have you had his hearing checked through an audiologist?

 

And when you had him reevaluated, who did the evals and what tests did they run?

 

I will be honest, one of the reasons Barton is not working as well for DS as it is for DD is that DS glitches on some sounds. DD struggled with internalizing the rules but once we slowed down, incorporated lots of review, etc. the program has worked brilliantly for her. It just takes a long time to get through the lessons. We usually do a lesson over 3 days now. In the beginning she needed as much as 2-3 weeks to get through a lesson. It was a slog but she was getting it.

 

DS, on the other hand, grasped the rules and the application immediately, way faster than DD, and internalized everything quite quickly. I was told that his struggles might have been because I moved him too quickly through Barton Level 1 and 2 but I know that is not the case. He got it. Immediately. However, he still glitches on certain sounds and it made the whole program very frustrating for him.

 

He did LiPS because he couldn't pass the screening initially but my mother was the one implementing it and for various reasons only did it sporadically and without much depth. It helped but not enough. He did pass the screening the second time and breezed through Level 1 and 2 with ease. Level 3 was problematic. He would grasp what the lesson was teaching right away but he sometimes failed to hear sounds he was saying or reading. He got really demoralized.

 

Last summer I ended up putting him in a specialized tutoring center that uses Barton and a whole host of other programs. It is several hours from home but it was worth it. They are excellent at assessing a child and determining what blend of programs might work best. They redid Barton Level 3 with him, alongside a LiPS type program, and it definitely helped. The tutor in charge showed me that he would still periodically glitch on the sounds but she gave me a chart for him to refer to when sounds messed him up. Barton was working but she showed me I needed to scaffold the sound glitches. I guess this would be sort of equivalent to scaffolding a dysgraphic student with their writing output?

 

We are currently in the process of trying to get both kids assessed through an audiologist because I suspect DD has CAPD and DS still has those odd sound glitches, among other things.

 

Anyway, I guess my point is that Barton might be great but definitely do the screening. If he doesn't pass the screening I would be looking at seeking additional answers for his struggles and trying something like LiPS. Dyslexia alone won't cause the issues you are seeing. Honestly, it is the comorbid stuff that can really muck things up.

Thank you for this. Truly.

 

The first eval was an Edu-Psych in 2012, and she did a Woodcock Johnson, a WISC-IV, an IQ test, and....not sure what else. She dx'ed dyslexia (I forget the term, but he has the type that is both auditory and visual), dysgraphia, dyscalculia, and suggested we evaluate for auditory processing as well as visual processing. She also discovered extremely low processing speed, poor working memory, and a million or so other things on all the various subtests. His processing speed is in the bottom 1% range.

 

The second eval was actually at Tx Children's Autism Center, and they did educational testing as well as an ADOS to screen for autism (he was non-spectrum and dx'ed with anxiety), and some assorted questionnaires. She repeated the WISC and the IQ test, so we have side by side comparison of those.

 

We do know there are do morbid things, and we are working on those as well. His speech therapist does not think he shows any signs of auditory processing concerns at this point, and his eval this summer didn't show any flags for it, but it is something we could still get checked if he doesn't pass the Barton screening. He definitely still sometimes mixes up vowel sounds in the middle of a word, but most of the time he corrects himself now, so it is improving. I think at this point he hears them correctly, but forgets which letter represents which sound.

 

He has had straight hearing checks, and his actual hearing is good. It is definitely a processing issue, but whether from the auditory side of his dyslexia, or CAPD, or just his poor processing speed in general, or...? Who knows.

 

May I ask if the tutoring center that you are using is a national chain, or just a local place? If it is national, would you mind sharing the name of it (either here or in PM)? Because honestly that sounds ideal, and of course on my to-do list is to call around and see what I can find locally, because what I feel I probably need is someone who knows this stuff telling me what to do with him. I can implement a plan, but I cannot cobble together the plan by myself anymore, ya know?

 

Anyway, thank you. We will definitely follow all necessary leads to get things properly sorted. I have just been so thrilled by his recent progress, I had no idea he was still doing so poorly.

  • Like 2
Posted

:grouphug:  :grouphug:  :grouphug:

 

Quotes: "I just hadn't realized or thought about forward progress being....erased...by the passing of time, and here we are, so far from where we came, but now with even farther to go. So, I think the word severe, sadly, fits."

 

"I have just been so thrilled by his recent progress, I had no idea he was still doing so poorly. "

 

 

I realize this is a hard thing.  You see progress and are thrilled and then you get a follow up evaluation and it makes it clear just how far you have to go.  It feels like you are running almost backwards while everyone else gets to run forwards.  I know this is tough.  I totally sympathize.  Give yourself some time to process things.  

 

Also, though, I think you need to flip your perspective, if you can.  He is making progress.  His progress has not been erased.  It just is slower than an NT kid.  A LOT slower.  I know that can be very demoralizing when you and he have put in so much work but honestly the fact that he HAS made progress is wonderful.

 

Let me share a bit more of my situation with my DD.  My DD should technically be in 11th grade this coming year.  She repeated a grade very early on so she will be technically in 10th grade this coming year based on transcripts from when she was in school.  There are areas she functions at grade level.  There are areas she is just a bit behind.  And then there is math.  We started homeschooling for 6th grade.  I tried all year to find a way to move her forward in math.  I knew she had struggled terribly in school but I had no idea how little she actually understood.  It was a nightmare year for math, even as Barton was finally helping her progress in reading/spelling.

 

Thanks to the ladies on this forum, I finally started her completely over in 7th grade, just like with reading in 6th.  I mean we started completely over with the most basic building blocks of math.  Not even 1st grade stuff.  In 7th grade she was trying to solidify even basic quantity.  She didn't understand place value or basic subitization.  She didn't even understand that 2 + 2 means two items added to two items and that adding those items together are always going to make four items.  Math was just a random bunch of meaningless symbols to her.  She could not sense the passage of time, she could not read a clock, she could not read a calendar, she could not read a ruler...and so on.  For three years we have moved in fits and starts and sometimes leaps forward.  She is now in 5th/6th grade math, after 3 years of hard work, but there are still areas that are horribly glitchy (like fractions, which has been a nightmare).  It has been a long, hard slog, and many times I have panicked or gotten deeply depressed when I look at where peers are, where she is expected to be, and where she actually is.  

 

What I finally realized was that I had to stop looking at her from the expectations of a parent of an NT kiddo.  I started looking at the fact that she IS learning.  She IS progressing.  Is she on a much slower time table?  Yes.  But that doesn't mean her progress has been erased by the passage of time.  It means that she is on a different time table.  I have to respect that.  I am proud of her for the progress she has made and I demean that progress when I fail to acknowledge what she has actually accomplished.

 

:grouphug:  :grouphug:  :grouphug:

 

I will PM you the name of the tutoring center.  

 
  • Like 1
Posted

Thanks very, very much, OneStep. We have similar math issues too. Yay, us. But you are right -- his progress isn't erased, even though the gap is widening. You are right. I know this. The evaluator was stunned, truly, with how much we have done. She cheered me on. She was astounded what all I have done, teaching myself how to teach him. She asked me, "isn't this so very hard?" And I told her, yes, of course it is. But I choose, every single day, to see what he gets right that day. So I notice the one time he remembers how to pronounce a th-word.....and not the nine times before that he forgot. Or the fact he knew it yesterday, and forgot again.

 

Same with math. We have mastered time telling, and calendar reading. Several times now. But he couldn't do them for her during testing, because if we don't practice it daily (and we haven't been), he loses that knowledge. And he is in the last book of Miquon, and he does understand math, but he still uses an abacus to actually get the answer. So he can do grade level math....but isn't on grade level, because he still counts for the answer instead of having it memorized. And of course by grade level I mean 4th grade, not 6th grade where he should be. But until she pointed that out to me, I didn't even think it was bad -- he knows how to do math, and he just might need a calculator all his life.

 

Your daughter sounds a lot like my son. I appreciate you sharing that; it reminds me to focus on those good things. I needed that. Because he really has come so far. And he will get to a place, one day, where he can be independent. We truly didn't know if he would or not in the beginning.

 

Hugs back to you, too, because I know this is an exhausting road. Thanks for encouraging me today.

  • Like 3
Posted

Did he have a speech problem? SLP eval? Audiology?

 

He's going to need LIPS and he needs it done by an SLP sounds like.

 

On my phone so being brief. Just saying he's going to need hands on, helping him feel the sounds. Earobics isn't close to adequate.

  • Like 2
Posted

Adding my ds was like that, needing extra input to distinguish sounds. It can be done but you need the person or to really learn LIPS yourself. I have a doc I can send you on how I did it. He'll need LIPS to continue into Baron 1-3

  • Like 2
Posted

Adding my ds was like that, needing extra input to distinguish sounds. It can be done but you need the person or to really learn LIPS yourself. I have a doc I can send you on how I did it. He'll need LIPS to continue into Baron 1-3

He has been in speech therapy for 2.5 yrs, and his SLP (and the current eval agrees) doesn't think it is an auditory processing issue, specifically, but more related to executive function stuff in general, specifically his extreme low processing speed.

 

That said, if he fails the Barton screening, we will definitely look into this further, and I would be thrilled to look at info in the LiPS program if you don't mind sending it. I haven't looked into it at all; Earobics seemed to help with most of it, and only in the last couple of months when we added in spelling besides his reading did I realize he still is mixing up his vowels. I am not sure at this point if it is him still not differentiating between the sounds, or if he is hearing the sound, but forgetting which letter represents which sound. He can repeat the sounds accurately, he just mixes up if it means an a, an e, or an i.

 

So...not sure if it truly is the same thing or not, but thank you for the ideas and suggestions! I am happy to look over whatever info you might have. :)

  • Like 1
Posted

LiPS honestly might help.  It is not as easy to implement as Barton but it can be done.  If he doesn't pass the screening (and I strongly suspect he may not), then definitely look into LiPS.  For a layman with no experience it may take some time to get familiar with the program before trying to implement it.  I would not recommend "winging it" with LiPS unless you have a lot of experience with this type of remediation.  You can purchase the program through  Gander publishing ( http://ganderpublishing.com/content/lips-overview.asp ) or maybe used through another source  or you can go to a Lindamood Bell Learning Center and have them tutor your son.  There are several around the nation.  The centers are really pricey and sometimes they will try to discourage a parent from having their child do LiPS because it is more tutor intense than some of their other options but I would fight for LiPS.  Be aware that quality of the tutor may vary.  Some will have a lot of training and experience and could knock it out of the park.  Others may have rudimentary training and you could probably do just as good a job if you put in the time and effort to learn the program.  

  • Like 2
Posted

Oh my goodness. I just looked at their website for the first time....the descriptions of the problems under the LiPS, Seeing Stars, and the oral comprehension all three could have been written about him.

 

There is a center near us. I cannot imagine what it will cost, and I don't know if these programs are possible to implement at home or not, but these sound like what he needs. I am so very glad you mentioned it, and that you asked the hard questions to get me talking. I think our road just got longer, but I think this is very likely where we need to begin.

 

Thank you.

  • Like 2
Posted

Oh my goodness. I just looked at their website for the first time....the descriptions of the problems under the LiPS, Seeing Stars, and the oral comprehension all three could have been written about him.

 

There is a center near us. I cannot imagine what it will cost, and I don't know if these programs are possible to implement at home or not, but these sound like what he needs. I am so very glad you mentioned it, and that you asked the hard questions to get me talking. I think our road just got longer, but I think this is very likely where we need to begin.

 

Thank you.

 I agree.  :)

  • Like 2
Posted

Reader,

 

Big hugs. This is hard I know.

 

You talk about "erasing memory" issues.

 

 

Have you, and I know this can sound goofy to some, have you thought about possibly he could be having seizures?

 

They can be very subtle and us not even know it is happening . for us it was a stare and far off look. that....was him having small seizures ( don't know how small they could have been BC they wiped out memory when they happened )

 

It may no b happening with you DC but it sounds like you're describing the other side of what happens when seizures are part of the mix.

 

It's very difficult to find or know esp. If they are subtle.

(Not laying in the floor flopping around, thata obvious, for us, noon would even know it was happening )

 

I read alot and from a small tyke I knew that "look" was wrong but didn't know why.

 

Seizures will produce the kind of thing you're describing . I would strongly encourage you to pursue this. Its so hard tho to find and know for sure .

 

Honestly , we just treated the seizures not knowing fir sure ( lime evidence on a scan etc.)

 

Seizure scarring can show up in a scan, the results can also be interpreted in different ways.

 

For us, my little guys are adopted and had druf and alcohol exposure in the womb. So, there has been alot to sift through . which is why what was coming up on the mri's was unclear for awhile.

 

Thank goodness one day while having a scan, he had a seizure . now we know for sure.

 

We take intuniv at night and this has, well, I was thinking yesterday, I dint think I've seen that far off look from him in quite awhile and we have been moving forward much quicker than we ever have.

 

I am not a huge fan of meds, never used them with my kids and was very hesitant to this time. But, we needed it and has helped tremendously .

 

Have you thought about a possible ADHD med to help with focus fir school time ?

 

I ask this because it can greatly increase the odds, the learning, retention ,and confidence. Fir our guys, confidence is huge and they can make greater strides when they are feeling confident .

 

Even if he doesn't have ADHD the meds for it can increase focus which leads to the things listed above.

 

There are some good ones out today. We are on vyvanse and it works wonders for us ( not saying it would for you)

My son does have ADHD tho, so, it REALLY helps him.

 

I agree with the previous posts on all of it lol .

 

W have alot of "going backwards" here too. We went back to the beginning of everything and retaught. This has helped tremendously .

 

We too have been told, no college , doubted even HS, learning to read? They have said ,well, pro's gave given a grim outlook/long-term prognosis.

 

I ,like you, refuse to accept thst for my son. We will as funly (I know not a word, adding humor is my best friend lol) as possible to cement the ideas , concepts , what have you.

 

APD : our kids are masters of compensation . alot of the professionals missed I with my boys.

It's been my experience, just BC the pros say he doesn't have it, doesn't mean he doesn't.

It sounds like some if that is goin on to me.

 

My youngest, for years they said, APD was present, but not severe .

Come to find out from our last round of evals , it IS severe .

All the times in OS when they treated itbas behavioral issue, was APD. I knew it then, didn't know it was assevere as it is.

Masters...at compensating , which makes diagnosing hard sometimes .

 

I would investigate / be on the lookout , fir seizures happening.

 

Get an EXPERIENCED audiologist to eval him.

 

And like the others have said, look at your successes :) sure helps me, and him.

I had to remember this one.

 

Start a journal . what happens when, how he responded. Watch his behavior and log everything.

Things you think may be insignificant can later you find, they may be huge.

And I agree w pp, sometimes we have to change our perspective.

 

Quick case in point. ....

Posted

My ds12 came to me a few weeks ago and was noticing all our books.

 

He said, mom, why do you have ALL these books? We don't use it all.

I pulled out book A and said...you dint use this ine? He said....oh. Lol.

Pulled out another book and said, you don't use this ine? He said. Oh. Lol. I did this with 4 books, the response frim his was the same. He finally said OK! And ran off to play .

 

I was insensed. I could not believe all the blood sweat and tears I put into this and.....he doesn't even know we USE those books ?

 

But, after a couple weeks of mom secretly inside on a low simmer about it , I realized.. He doesn't even realize we do as much as we do. ....YAY!!! Ha-ha :)

This means, we are doing it in a way that all these different books/curriculums don't seem as daunting to him as they could be.

 

SUCCESS! :)

I felt way better then .

 

The point is, look for successes where they may seem at first to be a negative.

 

Big big hugs. Theses boards have been a lifesaver for me as well. Just as onestep said. :)

  • Like 2
Posted

Also, I wonder how much if living in non English speaking countries at a young age is maybe attributing to having to go back and practice akot the phonetic part.

 

Just something to think about. Can be an encouragement that going back to the beginning could be partly because he wasn't hearing ALOT the English language spoken . like when you were out and about in the town, neighbors.

 

Even if they did speak English in the foreign countries, there will be accents slanted to their language .

 

Hearing the English language spoken we here in the States take for granted.

 

I bet there is a part that played in it. Again, an encouragement , he will probably make bigger strides hearing English spoken as a first language ( not with accents of foreign speaking with English as a second language)

  • Like 1
Posted (edited)

Oh, and we have also heard the " I haven't seen a case this bad" ...ALOT . starting at 18 mo old when we started private therapies.

 

That can be very discouraging.

Try not to let it. The brain is such a complex organ.

 

We even when we first started got the "oh I feel so bad for you I dint even want to tell you what I think" looks from the professionals. Then later came the grim prognosis for later in life.

 

Don't let that discourage you. It's hard I know. You feel so alone when you hear, " I've never seen a case this bad" but. You are doing the right thing. And the boards will help.

 

We saw my ds12 very first slp he ever had, 18 mo old and ahe worked with him for almost 4 years.

When she saw us in the grocery store. She could not believe how well he was doing. The fact that he COULD be in the grocery store ( bright lights, lots of people, things going in around him)

 

He ran and hid for so much if his earlier years. Basic social nuances eluded him.

 

His first spec. Needs. Teacher at the PS ( started at 3 yrs old ) , ahe became a friend . we see her a good bit, she is lovely and has oodles of experience, training , and and over 25 years of experience working with kids like mine.

 

She cannot believe the progress he's made . one in one with our kids is huge.

 

I'm sure your DC will make more progress than they say he will. You are on top of it and seeking answer s and gathering info and experience es in the boards.

 

Your doin good mama :) I can tell. Just keep plugging away. One day I bet he'll have an ...ah ha ..moment.

Edited by Kat w
  • Like 1
Posted

Kat, i'm going to reply here to all your posts :) 

 

re: seizures -- I am familiar with absence seizures (I have a relative who had them), but we have never, ever seen any sign of that going on with this child. At all. Our middle son does see a neuro for tourettes, and he did have some seizures during sleep....I forget the name but it something-or-other benign seizure something. Some kind of totally non worrisome thing. anyway, even that we  have never seen in our youngest. So, I don't think that is what's behind his "let's learn this again, shall we....?" kind of situation. I do think the processing, working memory, etc, etc, etc, stuff is behind it -- it's hard to describe how crazy bad his executive function stuff is, but it's bad. And it's related to his prematurity & low birth weight, everyone's been in agreement on that. Extreme case, yes. But consistent with low birth weight/being so premature, also yes. (he was technically a  micro-preemie). So, that's a lot of the "why" behind a lot of the stuff. 

 

re: autism/spectrum disorder -- I trust the evaluation on this one. He does, definitely, have social anxiety and social impairment, but he doesn't have the sort of social impairment consistent with autism/spectrum disorders, and he doesn't pretty much have any of the other markers or traits of autism/spectrum disorders. She (the evaluator) (and this was done at pretty much the top in the city, and maybe the top in the state, autism center) feels it is anxiety based, probably just social anxiety. Once he knows a person, his interactions are completely not out of character for an NT kid at all, and it doesn't take but a little one-on-one time for him to get to that point (for ex, in the morning with the evaluator, he was shy/frozen; by the afternoon, he was chatty, making jokes, interacting "normally"). So, I appreciate there "could be" something.....but I trust her when she says there  isn't, and why she says there isn't. 

 

re: Brazil. Yes. Definitely this plays into pretty much all of it. We had no clue when we went, that it would, but it did. The lack of spoken English outside the home meant that he learned to tune out everything around him, which means he never really learned how to process everything around him, which (most likely) contributes to his still very slow processing speed, why he seemed like maybe he had auditory processing disorders, etc.

 

The lack of written English in the environment around him definitely contributed to why he struggled so very much connecting written language to spoken language; for ex, we would pull up to a stop sign and call it a stop sign and say the word stop and this means stop....but on it would be written PARE, the Portuguese word for stop. So for however many hears, he internalized stuff like that (or ELE and ELA for boy and girl on a bathroom), and then when we introduced actual phonics instruction and showed him that STOP means stop, when all his life he'd associated PARE with stop.....I am sure that confused him, greatly, and further complicated his written language acquisition.

 

The lack of same-age friends outside our family compounded his social impairments; he didn't ever learn Portuguese, so his friends were limited to whatever age kids existed in the other ex-pat families we knew. Not once in all our time there did another ex-pat family (that we connected with, anyway) have kids his age. So he basically never, from age 2.5 to 8.5, had true same-age peer interactions, ever. Which we honestly never considered, at all, until here we are evaluating all of this and saying that out loud and it sure sounds a lot worse out loud than it was while we lived it. He had friends, but always a couple (or more)  years older than him. Also why we didn't notice things being different; he was different than his brothers had been at those ages, but it wasn't too "in our face" because he wasn't around other kids his age, and so he never really seemed as delayed as he is. Or rather, we just attributed the delays to the fact he was younger than his friends, so of course he wasn't doing x, y and z. 

 

re: grim predictions. Yes, agreed. I refuse to let someone else, someone who isn't with him 24/7, tell me what he will or won't be able to do. Because they may know his disorder or disability or delay, but I know HIM. They may have a master's degree in treating x, y and z...but believe me, I have a master's degree in this particular kid. So, no, I don't let it get me down really, even if some days it feels like it ;) I mentioned that mostly (the "worst case ever" because I just wanted to explain why I had used the word severe even though we haven't yet tried some of the "gold standard" for at-home remediation of all of this yet. 

 

Every day I keep choosing to notice the success of that day, whatever it is, however small. I have to. I'm sure we all do, or we couldn't stay sane. 

 

Anyway, thank you. Now we're off to speech and let the SLP know (with the blessing/approval of the recent eval) that we're halting speech for a while so we can focus our time and money onto more urgent matters. We'll have today and next week, and then that's all for that. If we're going to address this other stuff, we have to make room in the schedule and budget, and she declared his articulation goals mastered at his last progress report, so.....time to be done. 

  • Like 2
Posted

Oh, I'm sorry. I must have misspoke or autocorrect changed the letters lol

 

APD = auditory processing disorder .

 

I didn't mean autism. I meant the auditory stuff that the others mentioned.

  • Like 1
Posted

I like that...masters degree in your child :)

 

That's so true. They aren't with them like we are and don't know them like we do.

 

And that's good that the seizure aspect isn't playing a role. That helps.

 

Yay on speech :)

Have a good day :)

  • Like 2
Posted

Lips, seeing stars , visualizing verbalizing. All GREAT products.

 

We use them at home and have helped more than words can express.

 

The center's are very expensive. I am using mine at home with great success .

  • Like 2
Posted

....PS. I'm saving for cloud nine manual. (Their math)

 

I buy the manuals and pick and choose the workbooks ir flashcards etc.

 

We make our own flashcards , helps them remember better.

 

Crimson wife put a plan on here somewhere from someone she knew that is a graduating therapist.

 

I'm following that.

 

Maybe she can chime in here and post it.

 

The LBM products by Gander publishing are amazing. I LOVE them for us.

  • Like 2
Posted (edited)

What is his speech diagnosis?  

 

If you're going to pay for the LMB evals yourself, I would slow down.  Just saying I would.  They'll suck tons of money out of you, and it's stuff you're probably going to find you can do yourself.  I'm just saying slow down.  Burning through all your money will not help him as much as slowing down, looking at things.

 

Here's a link to my LIPS plus Barton plus PROMPT document.  I think that any dc who is still needing speech therapy at that age should have praxis (motor planning) questioned.  It would be an explanation for what you're describing.  PROMPT is AMAZING for apraxia of speech.  

 

https://www.dropbox.com/s/y26rcrwcp4g57mt/Notes%20on%20LIPS.pdf?dl=0

 

Ok, when you read the doc, it sounds confusing.  I bought Barton 1 and Barton 2.  I did NOT teach them separately from LIPS.  LIPS introduces concepts and a very production-based methodology.  PROMPT speech therapy is hands-on.  So I could show it, see it, touch it, feel it.  All hands-on, all connected in his brain.  LMB tends to hire just random people, which is another reason I would not go there, because they might not be any better at it than you would be with an equivalent amount of effort at learning the methodology.  If you were to go to a PROMPT therapist, they could do for you what I did.  I wrote it all out, and it's NOT rocket science.  Ok, it is.  I have a background in linguistics and have watched his speech therapy for years, learning the techniques.  But I'm just saying anybody who knows PROMPT *could* get LIPS and do this for you.  Then you have the direct connect to the brain. That's what I would encourage you to look for.

 

When your therapists are telling you it's impossible, might be time to look for a new therapist.  They all have limits in what they've been trained in.  I'm just saying this is what it took to unlock things for my ds.

 

I own all the levels (well not 7, 1-6) of AAS and SWR and on and on.  I used them with my dd.  I'm conversant with a lot of the things you tried, is what I'm saying.  You can take this a lot farther.  LIPS by itself is good.  Actually the new FiS (Foundations in Sound) is fine for most kids.  I like what I did, because it blended together our speech therapy and our phonological processing and Barton in a very hands-on way.  But really, you could *see* if FiS would be enough.  Or find a PROMPT therapist and ask them to do LIPS plus PROMPT with him.  

 

I think the problem is wanting a curriculum solution.  When there's a serious disability, it's not going to be enough just to look and imitate.  He's going to have to feel it, have it put into his brain.  I'd definitely be wanting a better explanation on the speech problem. What are they saying? Has anyone ever run a VMPAC on him?  It's a really thorough, thorough test on motor planning.  

Edited by OhElizabeth
  • Like 3
Posted

^^^ what she said lol

 

Our PROMPT therapist that we are going to start next month, I forgot to ask her I think about lips. Glad I read this . that's going to be important for him.

I think she does. Just dint remember .

  • Like 1
Posted

Elizabeth, no, I've never heard of a VMPAC, I don't think. I'd have to look at his speech reports....let me dig one out and come back. 

 

His main "speech" issue is that  he doesn't open his mouth, and doesn't pace himself. She has cleared his articulation/speech issues, completely, according to her. All goals met. So all she is working on now is oral motor stuff; he had tongue thrust, she fixed that, he doesn't close his lips when at rest, she is working on that, and assorted tongue strength exercises. But the last report, from a couple months ago, said his actual speech issues (nasally vowel sounds, articulation, etc) were resolved, goals met, done. 

 

Now, they aren't actually; only when he's in her office. The rest of the time, we have to cue him on things like "open your mouth", "pace yourself", & "raise your volume." He doesn't self-correct these things; he simply isn't aware when he needs to or not. 

 

I will look at all the stuff you posted, and your document, etc. I really appreciate it. His first eval (when we were in Brazil, but done here on vacation) gave us such a long list of things to check into, and as we've returned (2.5 yrs ago now) we've been going down the list as we're able. So, speech therapy, check. Autism evaluation, check. Repeat educational evaluation, check. Keep working on all the stuff in the  meantime, check. Audiologist/APD screening, not check, because the pediatrician & speech therapist both said they didn't see that, at all. Vision processing screening, not check, because *we* don't see that struggle, and because the other stuff seemed bigger. 

 

Now we are finally done with the waiting lists and repeat screenings/evals, and now the new list says the reading disability (and that's all it has ever been dx/ed as) is The Number One Priority, Period. And the anxiety (the social deficits) is Number Two/Simultaneous but not quite as urgent Priority. So, speech, which has been not doing anything lately anyway, is being dropped so we can find a therapist to figure out what kind of anxiety, and do CBT with him on that, because that IS a big issue for him (he almost has selective mutism, if you ask me, which of course they never do, but....). And we are just starting to research what all is involved in the reading disability, and what all is behind it, and what all needs to be done about it. 

 

I'm not actually jumping on any one thing as a magic cure, just in the "gather all the info on all the things" phase so we can look at all of it and figure out what will help. Whether that's one thing, or ten things, or stuff I don't even know yet. Like VMPAC and PROMPT and the stuff you mentioned that I haven't even heard of :) Which is why I'm glad I"ve got this forum and thought to post here, so thank you! :) I promise I'm really not looking for a "magic bullet" that will cure him, even if it seems like it. I promise I'm only gathering information at this phase, and trying to sort out what to do. We may end up doing a specific, more thorough, educational/learning disability evaluation before we proceed; it was suggested as an idea, because what was done was less thorough than what we did before. So maybe that's our next step, I don't know. We were also suggested a neuro-psych, but "maybe a year from now" to address the executive function stuff, and with his medical history that might even be covered under insurance. I don't know. Right now, I'm just in a "gather all the info" phase, and then dh and I will discuss and figure out and look at all the things and plan. 

 

I literally just got his results yesterday, so....this is just step one. I promise. ;) I won't throw any money, at anything, until we have a lot more info. 

  • Like 1
Posted

Sorry if you feel like we are rushing you.  I think everyone is just trying to share their knowledge as things pop into their head and hoping something in what we post may be of help.  :)  We know this is a process.  Boy, is this a process.  LOL.  And you have to research and weigh feedback and prioritize, which is exactly what you are doing.  You rock.   :hurray:

  • Like 2
Posted (edited)

Yes, sorry. There can just be so many aspects to delayed learning and lots of things can be missed.

They have been with my sons.

 

Onestep is right , it is a road, a long one in fact.

 

Ha-ha...yes! I go back and add things as u think o them. We moms have alot floating around in our heads about our own kids and been doing this a long time and ,...I just forget then as I ponder it, remember things...sorry :)

 

IMHO , I'm not sure the speech therapist is the beat one to asses informally even if he needs an APD eval ( auditory) . there are many aspects under the auditory umbrella and I sure am finding that out myself.

 

Pediatrician , unless a developmental , is not the one to asses that either. Even informally.

 

I would defer to the NP on thst but even still....is a test I would want run , if fir nothing else. To rule it out.

 

The best professional can miss things BC our kids are great at compensating.

Edited by Kat w
  • Like 1
Posted

Out of curiosity, what were his scores on the WISC? 

 

Can I ask  why you are interested? I'd consider sharing them by PM but I don't really want them floating around the web....

 

In general terms, he has composite scores in the teens, in the 40s and in the 70s (percentages, not ss) and he has sub scores everywhere from 5% to 95%.

 

His other tests (D-KEFS executive function test) has subscores from 1% to 91%, His WIAT-III (achievement test in math and reading) has composites under 10%, but subscores ranging from 1% to 30% (and the 30% is math problem solving, which is low for his age, but is on grade level for the grade he has completed, so that is kind of misleading).

 

(a lot of this is kind of misleading, because it was done as the one for his age, 11.5, although his grade is just finished 4th, which is age equivalent to 9-ish. So many of his percents are much lower than they were the first time around, because back then his age and grade matched (except for the reading). Now his grade level is behind his age level, so his percentages appear worse than they are. 

 

He had a VMI (visual motor integration test) which was 61%. 

 

If you need/want more info than this, let me know why and I'll consider a PM. :) 

Posted

Sorry if you feel like we are rushing you.  I think everyone is just trying to share their knowledge as things pop into their head and hoping something in what we post may be of help.   :)  We know this is a process.  Boy, is this a process.  LOL.  And you have to research and weigh feedback and prioritize, which is exactly what you are doing.  You rock.   :hurray:

 

no, not at all; I was referring to Elizabeth's comment about me slowing down and not throw money everywhere yet. Just wanted to assure you guys -- I'm not. Throwing money, that is. Slowing down, yes. 

 

I value every word that has been shared here, truly. A lot. More than I can explain, as I'm sure you all can relate to. I'm thrilled to be able to "talk it out" with people who get it, who won't recoil in horror when I admit his %ages dropped on the WISC (maybe because back then he was more on grade level, and now he's not) (or because more kids are remediated by age 11.5 than at age 7) (or who knows what). Who won't recoil in horror at an 11.5 yr old who just finished "4th grade" in the first place. Who understand what it means to have an 11.5 yr old that reads at the level of a 6 yr old. You guys are invaluable; I couldn't make heads or tails of this without this forum, I think. 

 

So, thank you. 

  • Like 2
Posted

...and, i have to run to church, so keep replying but know I probably won't be back to this until morning. I'm not ignoring anyone, and I'm not discrediting or tossing out anything y'all say, at all. I apologize too if I come off defensive or anything; I'm not, I'm just terrible at articulating in writing. I either say way too much, or I feel like I have said too much so I edit and then end up editing it down to something that sounds crabby or rushed or snarky or short or......anyway, if anything comes across remotely mean or ungrateful or argumentative, please know I do not at all mean it that way; I'm taking copious notes and researching all of what you guys are saying, gratefully so. 

  • Like 2
Posted

It's funny too , things in print always come off as, mmm, idk, maybe not how or what we intend.

 

In print you dint have voice inflection, body language , etc.

 

You're not defensive At all :)

 

Just trying to figure it all out like we are . tough sometimes to know.

 

I agree thinking(typing) outloud helps so much. Alot of time our dh aren't mayb the best to bounce things off of. They aren't as much in the trenches like we mamas are.

 

Think outloud here girl :) helps a ton I know. I do it alot too.

 

And there are people reading that benefit from these convos too. I try to keep that in mind.

 

Have fun at church! :)

  • Like 2
Posted

I don't post our numbers either. Mainly BC I don't ever want my kids to get a hold of them and see it and deflate them.

 

They will be on the web one day and oh boy, I would never want them to see this.

 

That, and noone would probably believe me on his wm esp. :/

  • Like 1
Posted

General is fine.  I was just asking because Barton is only "supposed" to be used with kids with IQ's above 70.  Other people have had success using it with kids whose IQ's are less than that, but it doesn't sound like that is an issue. 

 

The more you say about the oral motor issues, the more I think that it would be very good to have a screening by a PROMPT certified speech therapist, if you could.  And I would really push for the auditory processing eval...  if he's having to put forth a lot of energy/ effort into discriminating sounds, there's not going to be a lot of mental energy left over to apply that discrimination.  But, I totally get having to pick and choose therapies and time and money.  For sure! 

 

I have an 11 year old who just finished 4th grade.  She reads well, but her spelling is at a 6.5 or 7 year old level.  You're not alone. 

  • Like 2
Posted

Yeah, you just described classic apraxia.   :glare: 

 

You don't want me to rant about apraxia treatment, so I won't.  I'm just saying call a PROMPT therapist.  Call three.  Use their provider map, find all your options, call ALL of them, sift through who you like, and defer to the BEST trained person you can get.  

 

And never go back to that therapist.

 

And yes, when you get the PROMPT therapist, ask them if they could do LIPS with him.  But it's going to take a while.  

 

Is he listening to audiobooks?  For right now, I would urge you to get him audiobooks.  Not immersion reading with text, just the audio.  Did your psych or SLP do any language testing?  How are his CASL or CELF scores?  

 

It wasn't rude of the other poster to ask about IQ.  It's sort of an elephant in the room with these things.  You're wanting to know if the overall score is a concern (ID) and if there are any significant discrepancies.  A standard deviation for the WISC is 10, so any time you're seeing a spread of 20 points, that's SIGNIFICANT.  Somebody can help you read the tea leaves on those.  You can post the scores and then delete after a day if you want.

 

Mainly though, get an eval by an apraxia specialist (PROMPT SLP, preferably certified), fresh language testing (CASL), and honestly I'm going back to the autism question.  The psych who evaluated was a clinical psych?  This was an ASD clinic?  Because you've got a LOT going on there.

  • Like 2
Posted

IQ was around 100, give or take. Both this time and the first time four years ago. So that part is good. I will read the rest of this in the morning and figure out what all you guys are talking about....I have no idea what exactly standard deviations means in the context of this test, so if someone wants to explain I would love that. :)

 

I didn't realize the WISC question was mainly about the IQ part; there are so many parts to it, I just didn't know what all was being asked. I will come in the morning and post to delete later if some of you think that can be helpful.

 

And I will research apraxia and PROMPT. Thanks for those terms.

 

More tomorrow, cause I have got to go to bed.

  • Like 1
Posted (edited)

They convert raw scores on tests to a "standard score" in order to make them easy to compare and interpret.  So 100 is smack in the middle average for a standard score.  Then you have the bell curve and how it goes out, and that gives a cutoff for that test.  So kinda like percentiles but not actually.  You can have clumpings with percentiles, like most people being clumped in the middle.  So the deviations (standard deviations) tell you when it's actually significant and really farther out there than his peers.  So you can always ask what the standard deviation is for a test and learn to how to interpret it.  

 

Apraxia is a motor planning problem.  You can have praxis after a stroke and have to relearn the motor planning for speech.  So when the therapist says he doesn't open his mouth properly and has low oral tone, that, to me, screams apraxia.  In fact, it's one of the MOST CLASSIC symptoms, that the person either can't get their jaw to go down or can't get it back up.  Just so classic, a huge flag. And it's very uncommon to get someone who actually has the extra training to treat it or even diagnose it.  If you go to a PROMPT therapist, they'll actually demonstrate it to you.  But you're saying it, so you're on the right track.  It explains why more imitation-based methods of speech therapy and reading instruction weren't working, because he struggles to imitate.

Edited by OhElizabeth
  • Like 1
Posted

We had a speech therapist here who was speech period. At the kids PS their last couple years I noticed the speech therapist was SL , speech language.

 

Is there a difference? Like one can be solely speech without the language ?

 

We, if memory serves me at our old private place had a SL and a speech solely . not language included.

 

Would it have been different then and they made a change to certification requirements ?

 

Or am I mistaken and the speech solely therapist awhile back was....I dunno really.

 

I do remember that had an identification acronym after their names that were different. But don't recall the what the difference was .

  • Like 1
Posted

Oh, I'm sorry. I must have misspoke or autocorrect changed the letters lol

 

APD = auditory processing disorder .

 

I didn't mean autism. I meant the auditory stuff that the others mentioned.

 

Oops; I misread what you had there. 

 

Possibly yes, APD. I'm really not sure. The SLP says no, and the psychologist who did this current eval says she doesn't think so, but then, neither of them is super qualified for that. He does have the type of dyslexia that is also auditory in nature (his brain misinterprets what he hears, not just what he sees), so that is at play for sure, but whether or not there's also a separate APD on top of that, I have no idea. With the super low processing speed in the mix as well, and overall poor executive function, it's hard to sort out. 

 

The more I talk to all of you the more I think maybe we need to bump audiologist to the top of the list....I'm just not sure. And/or we need to repeat the extensive LD testing we did the first time, to sort of tease out all this bundle of strings of this LD and that LD and the other LD and....make some sense out of this tangle of stuff going on. Whenever I look at my son distilled down to these pieces of paper, these numbers and test results, I get very discouraged. I'd really love to find the right person who could look at the whole picture and say "this is what is going on, and this is how you help him learn how to learn...." (assuming such a person actually exists....ha!)

 

Luckily, when I look at my son, instead of the pieces of paper, I see the most amazing kid I have ever known. He is most of the time joyful, fun, insanely creative, very gifted in some ways, learning to have some empathy, completely not a quitter, ever, at all, developing self control to the point we've moved from out & out meltdowns when he was angry (a few years ago) to only expressing his frustrations with (still quite loud and annoying) words at this point.....he's an amazing kid. He is smart, funny, kind, loving....just all around amazing. 

  • Like 2
Posted (edited)

Find his strengths and interests and passions and tap into those as much as you can. It is those strengths that will help all of you get through the journey of finding, understanding and dealing with his struggle areas in whatever way makes the most sense and it is likely those strengths that will help him in his career and even his personal life as an adult if those are supported and allowed to flourish (and sometimes an area of weakness can also be an area of strength, such as dyslexic authors or dysgraphic writers).

Edited by OneStepAtATime
  • Like 1
Posted

Yeah, you just described classic apraxia.   :glare: 

 

You don't want me to rant about apraxia treatment, so I won't.  I'm just saying call a PROMPT therapist.  Call three.  Use their provider map, find all your options, call ALL of them, sift through who you like, and defer to the BEST trained person you can get.  

 

And never go back to that therapist.

 

And yes, when you get the PROMPT therapist, ask them if they could do LIPS with him.  But it's going to take a while.  

 

Is he listening to audiobooks?  For right now, I would urge you to get him audiobooks.  Not immersion reading with text, just the audio.  Did your psych or SLP do any language testing?  How are his CASL or CELF scores?  

 

It wasn't rude of the other poster to ask about IQ.  It's sort of an elephant in the room with these things.  You're wanting to know if the overall score is a concern (ID) and if there are any significant discrepancies.  A standard deviation for the WISC is 10, so any time you're seeing a spread of 20 points, that's SIGNIFICANT.  Somebody can help you read the tea leaves on those.  You can post the scores and then delete after a day if you want.

 

Mainly though, get an eval by an apraxia specialist (PROMPT SLP, preferably certified), fresh language testing (CASL), and honestly I'm going back to the autism question.  The psych who evaluated was a clinical psych?  This was an ASD clinic?  Because you've got a LOT going on there.

 

 

Okay, coming back now that it's morning. :) 

 

I of course cannot find the most recent SLP re-eval (she does one every 6 months, more or less, and the most recent one I can't find. The next most recent she never gave me the full report. So the one I'm using is actually from March 2015, although he's been re-eval'ed 2x since then...). 

 

re: audio books -- we read to him, lots, but I haven't utilized actual audio books. But, his brothers read to him at bedtime (Calvin & Hobbes, Percy Jackson series, etc.), his dad reads to him in the evenings (right now they are going through Goosebumps books), all of his school material is done read-aloud style (Story of the World for history, assorted interesting books for science at home, and he does science experiments at a co-op/enrichment thing we go to once/week), and the boys read comic books to him throughout the day as well. So, he is hearing stuff being read, and his comprehension is good on all of that. He is able to answer questions about the history, retell stories, interact with the stories while they're being read, etc. 

 

When we do his reading practice, he and I sit side by side and read out loud. He reads some, I correct any mistakes as he makes them. I read some to give his brain a rest. He interacts with the story while reading it, whether he is reading or I am. He reads with inflection most of the time, and once we had a SpongeBob book and he even did the character voices depending on who was speaking. He pauses for commas, has proper inflection when there's a question mark at the end or an exclamation point, and has pretty good spacing between words and sentences, and pretty good emotional tone to match what's happening in the story (making his voice sad if there's a sad part, or excited for a happy/excited part, etc.). His reading fluency when he reads is improving (as far as speed), too, without diminishing his reading quality. 

 

His CELF scores when he was first evaluated (Jan 2014) were: 

Core Language Index - 84 (SS)

Receptive -- 75

Expressive -- 77

Language Content -- 66

Language Structure -- 88

So, all but Language Structure were more than one standard deviation below the mean. 

 

His CELF scores on his most recent one that I actually have (Mar 2015):

Core Language -- 102

Receptive -- 109

Expressive -- 96

(she didn't repeat, or didn't list, the content/structure parts)

So, all of those are now within the average range, and 2/3 above the mean score. His more recent tests would similarly show even more improvement, I just can't find my most recent report. 

 

His oral-motor goals are all dealing with tongue/lip strength; he uses his jaw or chin muscle too much, she says. Mine is the same as his, though, so I don't know if that's a genetic thing, a structural thing, or I have the same issues as he has. (she says because his chin muscle dimples up when he closes his lips, it shows he is using that muscle too much and his lip muscles not enough) (mine does the same thing though, and so does my mom's, always has). 

 

His WISC scores (Standard Scores) if anyone wants to look those over -- (according to the report, mean is 100, standard deviation is 15)

IQ - 98

Verbal Comprehension Composite - 86 (w/in 1 standard deviation)

Fluid Reasoning Composite - 109

So, all of those parts are within one standard deviation, plus or minus, of the mean standard score. 

 

Some of the various subtests are more wonky, and he has a mix of highs and lows, but now I know to use the standard scores not the % rankings, so that helps me understand this a lot better. Before, I was posting the % ranking portion, not the actual score. (the part that compares him to x % of kids his age). 

 

re: apraxia -- he can, when prompted, speak correctly. On his initial eval with the SLP, she did the "puh-kuh-tuh" quick repeat test, and he was able to do it, and perform all oral-motor tasks given. His speech doesn't really sound, to me, like what is described when I read about apraxia. He mumbles or speaks too quickly, but if you tap the table to remind him to pace himself, he will repeat what he said, with proper pacing, and is understandable. If he isn't "opening his mouth" - by that I mean he doesn't open his lips all the way, not that he doesn't open his jaw all the way. And when you remind him to do so, he does, and his speech is fine. If he isn't speaking loudly enough, but you cue him to raise his volume, he does (although not always enough, depending on the situation), and his speech is clear. I don't know how many of those things would fall under apraxia, and how many don't. I don't know if the fact he *can* correct himself, with just a simple visual prompting, means he does or doesn't have apraxia. Or maybe the fact he *needs* the outside cue to be reminded to do it, is exactly what apraxia is. ??

 

He *can* do all the things, he just doesn't self-regulate, he isn't self-aware enough to notice when he is doing it or not doing it. But this carries over into lots of things -- outside playing, and he's all flushed because he's wearing sweats, because he hates shorts, and I say he might want a drink of water to cool down...and he says he's not hot. But his cheeks are flushed, he's sweating, just not aware that he's hot. Or, he's late eating breakfast or lunch and starting to get cranky, and I suggest he might want a snack and he yells that he's not hungry...but when you place the food in front of him and he eats it, he eats the whole sandwich or the whole apple or whatever, because of course he was hungry, he just is not self aware enough to notice. Now, not all the time -- of course sometimes he comes to find a snack because he's hungry, or a drink because he's thirsty, or whatever. But this unawareness of what his body is doing (such as what happens with his speech) is something that affects all of him, not just his speech. If he isn't tuned in and paying attention, he doesn't notice things. If we cue him, he corrects it. Whether that he's hot and needs water, cold and needs a jacket, hungry and needs a snack, or speaking too fast/too mumbly/too quietly and needs to correct that. 

 

Now, none of this is to the point where one friend of mine went, thinking he would literally starve to death if  he ever lived on his own because no one would be there to remind him to eat. Ummm, no. It's not to that extent. But if he's busy with something, then he isn't paying attention to whatever cues his body is sending, or he isn't aware of what he's doing (speech). No one yet has even tried to address that side of things, even to give it a name, unless that falls under the executive function stuff, so we just cue him as needed. But that's his current speech struggle, in a nutshell. He *can* speak properly. He *does* speak properly, enough that his SLP declared all his articulation goals met, because in the hour he's with her, he is tuned in to all the regulation of his speech, and so does it properly. But when he's excited about what he's talking about, or distracted by a game, or focused on whatever else he's doing (ie, the speaking itself isn't the focus), then he forgets to regulate everything. And then when we cue him, he fixes it on his own. Is that apraxia?? (yes, I'm still going to look up PROMPT therapists like you said, just trying to understand this)

 

Whew, I feel like I just talked for an hour.....sorry if this is overkill or too much :) and thanks for any further feedback you might have given this new information. 

  • Like 1
Posted

Find his strengths and interests and passions and tap into those as much as you can. It is those strengths that will help all of you get through the journey of finding, understanding and dealing with his struggle areas in whatever way makes the most sense and it is likely those strengths that will help him in his career and even his personal life as an adult if those are supported and allowed to flourish (and sometimes an area of weakness can also be an area of strength, such as dyslexic authors or dysgraphic writers).

 

thanks; we definitely do. He creates board games, builds video games, creates amazing things in Minecraft, and when I say "amazing things" I don't mean just one elaborate building, but whole maps of planned out mini games, quests, projects, etc. He has board games he's made where he's written cards that go with it, complex rules, strategies, etc. He draws mazes, he "draws" stories and then I scribe for him the narrative that goes with it....from a very young age he's done that. He used to draw in Paint on the computer, starting around age 3, he'd draw but he'd draw stories. So a scene, then another, then another. He has always done that, in Paint, on paper, he's full of stories. 

 

We give him as much time, space, ability, encouragement, etc, as possible to keep doing that. We play his board games with him. We encourage him to make new ones. We play chess (and get stomped) with him. We watch him build levels in Mario Maker, and try to play his levels, and they are so insanely complicated. He invents things for him and his older brothers to do in Minecraft, and we let him play on certain servers (one in particular has a "build battle" game, where all the players are given the same word and have to build it; he wins, often). We have tried some of the Youth Digital courses, but right now the structure of those is too much for him, but there's a local place that has hands-on classes which we will likely try this coming year. 

 

His current career goal is to be a YouTuber.....but I honestly imagine he could easily excel in game design, and we will encourage him in that, should he so choose. (my middle son wanted to be a pirate when he was 11, so I'm sure "YouTuber" might not stick...)

  • Like 1

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