both sad and happy at the same time?

[LaughingCat]

DD was reading The Lion, The Witch and the Wardrobe aloud to me and DD²today.  It is amazing the strides she has made.  It was a joy to listen to her reading relatively effortlessly a book at this level  (in clear opposition to a panicky post a couple weeks ago -- where she was just recovering from illness)

 

Which brings us to the sad side -- all the errors she used to make are still there, only at a lessor level.  The missed words are still random -- she can read hard words and words she has never/rarely seen before and then miss something comparatively easy/known.  She still stops and backs up now and then.  And skips words --- the good side there is that it took  about 15 minutes before she started skipping words that affected the meaning.  But even before that, going by the 98% correct rule, this book would not be considered independent reading.  By the strict version of the instructional reading, 95%, it is not even instructional reading after about 10 minutes.   She is reading this independently, which she can get away with because she knows the story-- which is cause for rejoicing because  even a year ago knowing the story would not have been enough for her to read this book.  Yet still I am sad that reading is such 'work' to her.

 

Another thing that makes me sad... is watching how easy it is all coming to DD^2.  I can see that DD² has a high chance that she will be able to read this same book in a year or two max (2nd grade is my prediction).  She was reading full sentences from it already today (not every sentence of course!)  She is still struggling with phonics -- above level but nowhere near mastered --  but given any kind of real reading (vs. words or stilted phonics things like Bob/Sam books) she blows through it based on knowledge, utilizing intuitively what she knows of language with what she knows so far of phonics to be near perfect.  It makes me sad two ways -- one that it will be so hard for DD the older when DD the younger surpasses her and two that I am unable to rejoice as I should in DD the younger's ability.  And that is all me, DD the older has taken it in stride so far, merely saying that DD the younger would be in the GT group at school. 

 

Please don't quote too much -- I am already feeling like this is oversharing of my pity party so may be deleting tomorrow. 

[OneStepAtATime]

Hugs

[PeterPan]

At times like this I wish I had a much better memory, sigh.  What is your take on why your older dd is struggling with reading?  You've used some explicit materials (Dancing Bears?) right?  And you consider her dyslexic, right?  Has she had an actual eval and a WISC to get her IQ?  I'd get that done, because it sounds like she's equating reading ability and intelligence, which is NOT THE CASE.  Only schools are so crass as to do that to kids, defining kids by reading groups where everyone knows the SMART kids are the top reading group and the DUMB kids are the lowest.  

 

Why let her define herself that way?  End it.  Get evals, get the score, put it to rest.  And maybe don't let the comparisons come up.  If one has an SLD reading and the other does not, that's not right to let them compare.  Make her dyslexia hip and get her technology and things the younger doesn't get.  Have you seen the stuff by Ben Foss?  He totally inspires me on how much we need to MAINSTREAM this and build up their SOULS as much as their reading.  It's more important that she feel good about herself and that she has something to give to the world than it is, maybe, quite how well she reads.  She doesn't get that, but maybe we can find ways to de-emphasize it as what defines us and makes us worthwhile and successful, kwim?  Like in my own mind, I've decided, and you can call this crazy, that I'm going to TEACH like he's going to succeed but that I'm OK AS A MOTHER with any outcome, even a total non-reading outcome.  Because if I'M ok with his inability to read (but still teaching!), then maybe HE can be ok with it.  It's no big deal.  We ear read and we eye read and either work and let's pick the one that's working right now.  Kwim?  But I think it starts with me.  

 

Does she have a device where she can do immersion reading?  

 

You know, how crazy is this, but what would happen if she did reading aloud WITH the immersion reading?  Like if she turned the volume down low, it would almost be like choral reading, kwim?  And the cursor highlighting the words would help her track at a consistent pace.  I don't know, never tried it, just had it occur to me.  Break some rules I guess.  :)   

 

So you can do immersion reading with a kindle or you can do it with some of the reading apps on the ipad (VoiceDream, maybe Learning Ally, don't know which all).  

[FairProspects]

Is possible you are just mourning the loss of an expectation? None of us want anything to be difficult for our children. The dyslexia will always be there and yes, regardless of the other strengths, gifts, etc. that a child possesses, it is a loss of our expectations about reading. I'm sorry it is hard right now!

[kbutton]

Along the lines of what OHElizabeth suggested about choral reading, maybe a whisper tube? You can get them at teacher stores and such. Here is an article about how they work: http://www.righttrackreading.com/phonicsphones.html 

 

I almost bought one for my DS when he wouldn't read aloud, but he got over that by the time I figured out where to get one (I see them much more often now, and they have them on Amazon).

 

 

[LaughingCat]

We actually are going to get evals done this summer (hopefully -- depending on timing) -- I must admit that scares me at the same time I look forward to seeing the results.  Just got to let that go and move forward though....

 

The GT thing... I don't think DD is equating reading with intelligence as much as it is clear that DD the younger excels in this area (although yes, she is using school 'language').   We have talked about different people having different gifts... but DD the older's gifts are not so clear in the educational realm.  It is not just reading -- it clearly takes her longer to process/get things than other kids.   One place she does excel is putting the work in -- if she thinks it is necessary.  Which is what has kept her up to grade level in most subjects (except reading) and she knows it.    Unfortunately reading programs have never made her 'necessary' list -- she would be perfectly happy just listening/watching everything.   And she does not like to immersion read at all -- she will sometimes read a real book along with either an audible book or my reading -- but she will not immersion read (same with whisper tubes).

 

Yes, I think I am mourning the loss of an expectation -- that I would be able to help her 'fix' things.  I've known this intellectually for a long time -- but I think it is only as DD the younger moves into reading that it has become known in my heart.  I think it was listening to DD the younger read full sentences from this book that set me off too.

 

As far as what we've done -- VT, Dancing Bears, LIPS, Rewards, more VT, homegrown bits and pieces focused on rhythm and tracking.   Perhaps part of the problem is that this last year I haven't felt like I have a clear plan - and not anything going forward either.    I think I have bought more things this year than any other too-- trying to figure out where to go next.  

 

[PeterPan]

Laughing Cat, ok, I'll ask this and you can say it's none of my business.  Why aren't you using Barton?  

 

My dc with 3 SLDs and a bunch of other labels has an IQ almost a standard deviation above my dc with only 1 label.  Seriously, you do NOT want to let them equate IQ and academic achievement.  Maybe your younger actually is more gifted than the older, sure, but it's very possible it's the total, total opposite.

 

I'm glad you're going to be able to get evals to get more precise guidance!  :)

[texasmama]

(((Hugs))) I understand.

 

Comparison with a same age peer when my SN kid was just four years old hurt my heart. And his younger brother has jumped over him academically. Comparison is hurtful but inevitable when you have close in age kids and the older one struggles.

 

However, my SN kid has an amazing work ethic. He tries and tries and does not give up. This is better than giftedness, IMO.

 

Get the evals, identify the strengths, be sad when it hurts, and keep pressing forward.

[LaughingCat]

Originally I did not choose Barton due to price and the perception I had that it was all about rules.  DD struggles with applying rules.

 

Now -- thinking along these lines I even bought level 2 this past year (already had 1), thinking maybe there is something in there that I am missing. And I've considered buying level 3 (since I know that 1 & 2 are fast for many kids and things slow down in 3) but the thing is...  I know she would 100% not buy into such a huge step back as it would be to go to Barton.   There is no way I could spin it to make it acceptable-- so it just would not happen - instead we would be locking horns with each other over it daily.   And I'm not convinced anyway that Barton is the way to go. 

 

And really, the biggest improvement in these particular issues has come from the PACE style work I cobbled together myself.   Or the balavisx work she did last winter seemed to be worthwhile.  So if anything, I think I need to pursue those kinds of paths more.   Basically -- find areas where she clearly glitches -- and work on those -- and then find a way to apply that type of work to reading. 

[PeterPan]

With Barton you have clear presentation (which of course you can get other ways), multisensory (which of course you can make happen yourself), controlled reading sources (extensive, beyond what I've seen in other programs, very mature and appropriate for a gifted or older student), and a focus on getting enough repetition to build automaticity.  It's that last thing that fascinates me, because I find with ds I SO want to just zoom, zoom, zoom!  Barton gives me enough material that I can get him the repetition it takes to build the fluency and automaticity to apply the rules.

 

Did that make sense?  Like yes, you're breaking it down into a zillion bits, but you're practicing each bit individually and then in a spiraling context, till the response to that bit is AUTOMATIC.  

 

You shouldn't need to repeat all those levels, mercy.  In the back are end of level tests.  Give her the tests (since you have the levels) and just see what happens.  If she can do the tasks in the end of level test, you're done with that level, kwim?  Then you move forward and repeat with level 2.  And I *think* (someone else would know better) that if she passes most of a level and just has a couple goals you just go back and target those sections.  

 

It's all about whether you have automaticity for the steps, not whether you did it with Barton.

 

Have you done RAN/RAS work?  I'm with you that other work can dramatically affect reading, absolutely.  RAN/RAS scores directly relate to reading strength, and they're something you can work on for free, with no hassle.  I've shared my dropbox folder in the past and am being lazy.  You can google to find it.

 

The one curious thing you might find, if you decided to test her through Barton, use it to fill in any gaps, and then move forward, is that the materials it uses are very complex.  I was looking at the AAR readers today, and they have a much younger demographic and target audience.  Barton, with the same amount of phonics instruction, is using MUCH more sophisticated, lengthy passages.  AAR does some need things, but Barton's are definitely longer.  I think that can be really good for a gifted child, because in a way we're saying let's get this into what you really WANT to read (real books, longer things).  Just something to look for as you're looking at the materials.  But see if you can find those end of unit tests to test her through the books.  It would be interesting information for you in determining what is instructional gap and what is fluency.

[LaughingCat]

On her SLP testing she did fine for RAN (I'll have to dig the scores out to see exact score).   There the only test she did poorly on was the number strings (working memory/processing speed).    And she has never had trouble naming some thing (vs. word) she is looking at --- although she does have trouble pulling thoughts out of her head into words.   

 

Kinda like the other recent thread about not being able to describe until 2 days later -- except DD's seems less time related.     I have worked randomly on having her say anything related rather than just saying "I know but I just can't tell you" because sometimes that sparks her (and other times it at least shows me she is in the right/wrong ball park).  Along those lines, a visual can help spark her too -- but overall she does not present as a visual learner/thinker  (for example, she's not all that interested/focused on pictures in books, linking a picture to a word doesn't seem to help her learn the word etc).

 

Giving the tests is a good idea.  I did pull some things out of the 2nd level to do with her -- but I know in doing so I am losing all the 'extras' -- because presenting a bit as 'lets try this and see how you do' is far different than teaching hand motions, doing daily etc.

 

[Lecka]

I do think you have been using quality programs, LaughingCat.  You have totally been using quality programs, and I also think you and your daughter have been putting in the work over time.  

 

My younger kids are twins, and my daughter is mostly way, way ahead of my son.  Once in a while he may shine in comparison to her in some obvious way.  Mostly, he does not.  He is still a great kid and has a lot going for him.  It just does not work to compare him to my daughter.

 

Here is what I find when talking to people ------ I get these little cuts all the time, they are frequent but mostly they are not too bad.  

 

For people who are not around other kids so much, or other peers of their kids so much, or a younger child, etc, they do not see these things very often, but when they see them they are comparatively large and crushing.  

 

It is not a total "one way or the other," but I think that having a younger child does mean you are going to be put in positions often to notice. 

 

I am just trying to look on the bright side to say -- at least maybe you will not have so many of those serious gut-punch moments that I hear about more from people who do not have as many times to notice.  

 

I am really hopeful that my son will have a happy and fulfilling life, too.  Long-term thinking vs. short-term thinking can help, too, b/c if things seem hopeful long-term that can make current things seem like "maybe this is short-term" even though they are difficult things at the moment.  

[PeterPan]

It's on the Tip of My Tongue: Word-Finding Strategies to Remember Names and Words You Often Forget

 

I wish I had had this book on word retrieval when my dd was young.  Someone else mentioned it here on the boards and I got it through the library.  Very thorough, very practical.  So part of what you're describing is word retrieval and lexicon, part is processing speed.  The RAN/RAS is not so much about word retrieval (which is complex), but about the actual *speed* of naming.  So, if you look at the files at this link https://www.dropbox.com/sh/4rcl6f0uo70esmv/AAAaGAHw3_YTMEQZSw_WI-t_a?dl=0

 

they have dots and maybe a page with numbers.  You're literally just looking for who fluidly she can name them aloud, bam, bam, bam.  Rapid naming is directly correlated with strong reading.  

 

Just going back to your original post here, I don't know if this applies or not, but one thing we're struggling with here is that ds is decoding individual words and phrases and sentences, but when you pull it into longer texts it gets really crunchy.  I've written Barton a couple times now with stuff (that doesn't seem to be going as well as the book implies it ought to, not just coming), and she writes back saying what I'm describing is not because of the dyslexia, that it's because of the REST of his labels.  We're just working on it and working on it, but it really is that consternation when you want it to come together.  I had already broken apart the spelling component to let it lag behind, but now I'm realizing I'm going to have to break off the full page story reading component too and just let him move forward with some things and lag behind on others.  So I don't know totally what you're dealing with, but maybe you have more things factoring in causing what you're seeing?  Maybe, like Lecka's saying, it's that a certain point it's not the curriculum but something more intrinsic to her mix of issues?  Dunno.  I say we all meet and party in 2 or 3 (or 4 or 5) years when this is all behind us.  :)

[OneStepAtATime]

It's on the Tip of My Tongue: Word-Finding Strategies to Remember Names and Words You Often Forget

 

I wish I had had this book on word retrieval when my dd was young.  Someone else mentioned it here on the boards and I got it through the library.  Very thorough, very practical.  So part of what you're describing is word retrieval and lexicon, part is processing speed.  The RAN/RAS is not so much about word retrieval (which is complex), but about the actual *speed* of naming.  So, if you look at the files at this link https://www.dropbox.com/sh/4rcl6f0uo70esmv/AAAaGAHw3_YTMEQZSw_WI-t_a?dl=0

 

they have dots and maybe a page with numbers.  You're literally just looking for who fluidly she can name them aloud, bam, bam, bam.  Rapid naming is directly correlated with strong reading.  

 

Just going back to your original post here, I don't know if this applies or not, but one thing we're struggling with here is that ds is decoding individual words and phrases and sentences, but when you pull it into longer texts it gets really crunchy.  I've written Barton a couple times now with stuff (that doesn't seem to be going as well as the book implies it ought to, not just coming), and she writes back saying what I'm describing is not because of the dyslexia, that it's because of the REST of his labels.  We're just working on it and working on it, but it really is that consternation when you want it to come together.  I had already broken apart the spelling component to let it lag behind, but now I'm realizing I'm going to have to break off the full page story reading component too and just let him move forward with some things and lag behind on others.  So I don't know totally what you're dealing with, but maybe you have more things factoring in causing what you're seeing?  Maybe, like Lecka's saying, it's that a certain point it's not the curriculum but something more intrinsic to her mix of issues?  Dunno.  I say we all meet and party in 2 or 3 (or 4 or 5) years when this is all behind us.   :)

I'm all for that.  :)

 

And yes, here, too it is the "other things" that are really causing the reading/writing/spelling to be challenging.  In running two different dyslexic kids through Barton, it made it painfully obvious that the different combination of strengths and weaknesses are causing very different results with this program.  Dyslexia alone is really not that hard to deal with, as far as I can tell.  Get a good phonics program, move slowly, be patient, things start functioning much more smoothly.  Not perfect by any means.  But definitely better.  Its when you add in everything else that life gets messy.  DS is so bright.  But the other issues besides dyslexia are causing him to continue to lag behind DD in reading/writing even though he actually outstrips her in cognitive ability overall.

[kbutton]

I'm all for a party!

 

OhElizabeth, I am curious what full-page reading looks like in Barton. My kids' stamina lagged behind ability for a long time without a dyslexia label. We just let it, or bribed, or whatever worked. Often, they responded really well if they read a sentence, we read a sentence, etc. Not sure if that is appropriate here or even what a full page of Barton reading looks like.

[OneStepAtATime]

I'm all for a party!

 

OhElizabeth, I am curious what full-page reading looks like in Barton. My kids' stamina lagged behind ability for a long time without a dyslexia label. We just let it, or bribed, or whatever worked. Often, they responded really well if they read a sentence, we read a sentence, etc. Not sure if that is appropriate here or even what a full page of Barton reading looks like.

At the end of each lesson there are 4 story options.  Two are labeled Basic and two are labeled Advanced.  For a NT reader either would probably not be much of an issue.  They really aren't that long.  However, for a kid that struggles to read, they can be long.  The Basic story is more basic in structure, shorter in terms of the number of words, etc.  The advanced versions are more text dense and the word choices are a bit more complex in terms of decoding and content.

 

I'll give an example.  Level 4, lesson 11 the 1st basic story is 66 words long.  It is 3 paragraphs plus a final sentence to the story.  The advanced story is 78 words, 3 full paragraphs plus a sentence but is more complex in story structure and word choice.  The words used in the story are mainly words used in the phrases and sentences that were read earlier in the lesson but even if they haven't seen them before they should be able to decode them since they will all follow rules already introduced/mastered.  Still, the stories can be long for some kids.

 

In earlier levels the child only reads one of the 4 stories.  By Level 4 they are expected to read two stories at the end of the lesson.  

[kbutton]

My kids would've balked at that too, even though they are not dyslexic. But, they do have some of the "other issues" you were all talking about. Just curious and thought I'd offer a comparison since it's hard to know what is giving a kid hangups sometimes.

[PeterPan]

I'm all for a party!

 

OhElizabeth, I am curious what full-page reading looks like in Barton. My kids' stamina lagged behind ability for a long time without a dyslexia label. We just let it, or bribed, or whatever worked. Often, they responded really well if they read a sentence, we read a sentence, etc. Not sure if that is appropriate here or even what a full page of Barton reading looks like.

Kbutton, you're saying kids, but I'm curious if this is specifically and especially your older ds?  Barton is telling me, which I explain what I'm seeing, that his full page reading struggle vs. word/phrase proficiency is because of the ASD.  So what you're saying would actually serve to confirm that.  She says that's not a typical pattern for dyslexia alone.  And when I told her about his (sometimes severe) comprehension issues, same deal, that they're the ASD, not the dyslexia.  

 

And it really is mind-boggling, because at this point he's really becoming quite brilliant on his decoding.  There's such a gap between that and his ability to walk up to a page that I've concluded we'll just move forward without the full page and let full pages build gradually.  How did you handle it?  

 

And yes, a full page in level 3 of Barton is maybe 6-8 simple sentences.  Barton's prose is beautiful for such restricted phonetic options.  Somehow she manages to create variety, so you'll have sentences like "When Kent was at camp, a rock fell from the cliff," and shorter sentences like "It was a shock!"  At this point, I can give him those sentences typed onto single pages and work on them, one sentence at a time.  I'm going back and having him read the full page version of the story, with all the sentences on one page.  That particular story, basic level mid-way through level 3, has 6 sentences.  He has refused a cold reading of a page, so he's reading full page stories of things he previously read as single sentences with help on comprehension. 

 

It just starts to feel insurmountable, when you realize you have so much phonics instruction AND you're going to have to build him up to actually reading something in a sustained way.  So he can read a phrase or short thing here or there, but it's really struggling to carry over into anything longer.

[PeterPan]

At the end of each lesson there are 4 story options.  Two are labeled Basic and two are labeled Advanced.  For a NT reader either would probably not be much of an issue.  They really aren't that long.  However, for a kid that struggles to read, they can be long.  The Basic story is more basic in structure, shorter in terms of the number of words, etc.  The advanced versions are more text dense and the word choices are a bit more complex in terms of decoding and content.

 

I'll give an example.  Level 4, lesson 11 the 1st basic story is 66 words long.  It is 3 paragraphs plus a final sentence to the story.  The advanced story is 78 words, 3 full paragraphs plus a sentence but is more complex in story structure and word choice.  The words used in the story are mainly words used in the phrases and sentences that were read earlier in the lesson but even if they haven't seen them before they should be able to decode them since they will all follow rules already introduced/mastered.  Still, the stories can be long for some kids.

 

In earlier levels the child only reads one of the 4 stories.  By Level 4 they are expected to read two stories at the end of the lesson.  

Once reading clicked for dd, she didn't struggle.  For her it just transferred right over.  But that's no ASD and no SLDs.

[kbutton]

Kbutton, you're saying kids, but I'm curious if this is specifically and especially your older ds?  Barton is telling me, which I explain what I'm seeing, that his full page reading struggle vs. word/phrase proficiency is because of the ASD.  So what you're saying would actually serve to confirm that.  She says that's not a typical pattern for dyslexia alone.  And when I told her about his (sometimes severe) comprehension issues, same deal, that they're the ASD, not the dyslexia.  

 

And it really is mind-boggling, because at this point he's really becoming quite brilliant on his decoding.  There's such a gap between that and his ability to walk up to a page that I've concluded we'll just move forward without the full page and let full pages build gradually.  How did you handle it?  

 

And yes, a full page in level 3 of Barton is maybe 6-8 simple sentences.  Barton's prose is beautiful for such restricted phonetic options.  Somehow she manages to create variety, so you'll have sentences like "When Kent was at camp, a rock fell from the cliff," and shorter sentences like "It was a shock!"  At this point, I can give him those sentences typed onto single pages and work on them, one sentence at a time.  I'm going back and having him read the full page version of the story, with all the sentences on one page.  That particular story, basic level mid-way through level 3, has 6 sentences.  He has refused a cold reading of a page, so he's reading full page stories of things he previously read as single sentences with help on comprehension. 

 

It just starts to feel insurmountable, when you realize you have so much phonics instruction AND you're going to have to build him up to actually reading something in a sustained way.  So he can read a phrase or short thing here or there, but it's really struggling to carry over into anything longer.

 

Both my kiddos didn't like lengthy reading. We would alternate reading sentences with them, then eventually paragraphs and pages. They wouldn't finish Bob books without help! For my younger one, I think the processing to read new words was insanely hard. For both, it seemed to be stamina. It clicked eventually. They also did a lot of re-reading during that stage, and still re-read a lot of things they enjoy. My older one made peace with longer reading a bit sooner, simply because he was in school, and "all the kids were doing it." He was one of the best readers in his Kindergarten class, and they all were doing first grade work before they left K (they had a lot of kids in his grade that probably would've qualified as gifted--an unusual concentration of them), so it wasn't decoding ability. 

 

Comprehension was not a significant problem, but the older one definitely has some quirks with comprehension, such as taking things too literally and such. 

 

I really think the problem is very typical, but you might just be seeing a stronger version of it. Of course, the comprehension is a bit of a concern as well, but you have time to work on it. Do you remind him that he is reading so that he can answer questions at the end? Each time? It might be a multi-tasking thing right now. I am pretty sure it's expected for comprehension (and spelling) to lag behind decoding.

[LaughingCat]

Yes, I often think that DD's continuing struggle is 'other issues' rather than dyslexia and not in the common mold -- it is one of my 'fears' about doing the NP even.  She doesn't seem to fit into any typical description of other issues either.    But I know some of that might just be my inexperience too.

 

 

 

 

[PeterPan]

I don't think you ever get a complete picture.  All these people look at parts and their explanations are as good as the number of parts they consider.  My ds has seen 3 psychs and 4 SLPs.  Seriously.  And do we have AGREEMENT even among them?  Nope.   :lol:  But I have enough INFORMATION from those 3 psychs and 4 SLPs and 2 OTs (scratch that, added #3 yesterday), that I can move forward and make some plans and get something actionable, kwim?

 

Honestly, I know some schools do a slapstick job, but our school has, in a less than intentional way, been incredibly helpful.  They've done what they needed to do and the extra things I pushed them to do, but the bonus is give me two hours for free at the table with an SLP and I'm going to ask a boatload of questions, kwim?  And I got to do that with their OT and the SLPs and the psych...  It really changed my perspective to see what they might see in him and how they might handle the scenario in their setting.  And it sorta held my feet to the fire with wow, hadn't thought of it that way, hadn't pushed for functionality on that issue.

 

I don't think you're going to find an omniscient psych who rubs a ball and solves all your problems, kwim?  But they're going to give you some pieces and you'll ask questions and you'll put it together into an actionable plan.  YOU are the magic for that, because you connect the dots on all these people.

 

I forget, we're talking dyslexia/SLD reading in the mix, right?  You might pick up the phone and call whatever dyslexia tutor your np likes.  Seriously, any time you can talk to these people you learn stuff.  Just ask them how they would approach it, how frequently, what they'd use, how they'd handle xyz problem, etc.  

 

But you're right, I should have done a better job and found the PERFECT neuropsych, one who would have sucked up $10K (what some hospital psychs will bill at $350 an hour!!) and required travel and spent 10-15 hours testing.  But I'm telling you no matter WHAT you pay and who you get, you're STILL not dealing with an omniscient person.  And they're not used to being compelled to apply the results, because normally a parent just says thanks and takes it to the school, kwim?  So here we are saying help us know how to interpret tests that people go to college to learn how to understand.  It's no wonder we get so overwhelmed in this!  But we can learn.  And yeah, some kids are just not tidy with the DSM.  But that's ok.  You're still going to get a lot of info that you can piece together.  It has taken me 9 months, 3 psychs, 4 SLPs, 3 OTs.  We're always learning, asking more questions.  Some of the info I got 9 months ago only NOW makes sense.  And that's ok.  We just keep learning.  

 

[texasmama]

But I'm telling you no matter WHAT you pay and who you get, you're STILL not dealing with an omniscient person.  And they're not used to being compelled to apply the results, because normally a parent just says thanks and takes it to the school, kwim?  So here we are saying help us know how to interpret tests that people go to college to learn how to understand.  It's no wonder we get so overwhelmed in this!  But we can learn.  And yeah, some kids are just not tidy with the DSM.  But that's ok.  You're still going to get a lot of info that you can piece together.  It has taken me 9 months, 3 psychs, 4 SLPs, 3 OTs.  We're always learning, asking more questions.  Some of the info I got 9 months ago only NOW makes sense.  And that's ok.  We just keep learning.  

SO MUCH THIS.  Every person/kid is different and has a different mix of issues which need a different "prescription" for treatment.  And then even with the identical diagnosis, even if you can hunt down the correct one, kids respond differently to the treatment.  As the kids grow and get older, they change and mature and some things become more clear that were an absolute mystery.  Professionals doing evaluations have their own lens they are viewing the world and clients through and a snapshot at one age/stage of a kid to go by.  It is HARD to "get it right" sometimes.  I say that as a professional who has been asked to make those judgment calls.  And sometimes I have had to say "This is a wait and see situation because it could be several different things."  That is not what parents want to hear.  It is not what I want to hear as a parent.  But it can be the most honest answer.

 

Try to predict what your young child will look like in adulthood.  Not possible.  I don't look like my second grade picture.  My college girl does not look like her second grade picture.  No one does.  We all change.  And that is just our faces!

 

As parents, we have to be willing to search for answers, patient as we wait for changes/growth, humble with others walking this path because no two paths are identical, and forgiving of ourselves for not "doing it all perfectly" because no one would.

 

My kid got the mom he needed.  OhE's kid got the mom he needed.  What we do will matter long-term.  It will make a difference, even if we can't see it day by day or month by month or even year by year.  I waited about seven years for OT to fix my kids retained primitive reflexes.  Other gains were made during that time, but it took seven years for that to happen.  Perseverance is the key here.

 

I don't know if that helps anyone but me, but I so much loved that last paragraph that I had to quote it

[PeterPan]

As parents, we have to be willing to ... [be] forgiving of ourselves for not "doing it all perfectly" because no one would.

 

My kid got the mom he needed.  OhE's kid got the mom he needed.  

I'm in my post-IEP scholarship win sadness, realizing maybe I'm not as good as the school at things and NOT going to do a good enough job on some things.  That whole forgiving yourself for not doing it perfectly is SO key, at least here.  And today, I feel like a failure even when I haven't started, lol.  I think it's almost like we tell ourselves in our minds that we *not only* have to help our kids, but we have to do it BETTER than anyone else could have!!  

 

I guess he got the mom he needed.  And being a mom is about hard calls about what is important, sigh.  That school sure is shiny.  But reading is important.  Methinks I need to set up some centers.  What they had going in that K5 room was crazy awesome.  They had centers and 40 minutes of math done bam, bam, bam lots of different ways and social skills woven into the normal morning routine.  Wow, we can feel like a failure!  And will our KIDS forgive us for being imperfect?  What will THEY look back and remember?  I doubt kids look back and remember those little centers and workpages and smile happy thoughts 20 years later.  But they remember hugs and labs and cuddles and books and moments looking at the stars.  

 

So that's what I'm pondering, if I'm going to do it IMPERFECTLY, what at least do I want him to remember?

[texasmama]

You will just have to trust me when I say that your kid got the mom he needed.  :)  And you are doing it differently than I would.  Or anyone else would.

 

What do you remember about your own childhood?  I think specific memories are less important that the overall feeling you had.  Were you loved?  Did your parents show up and suit up where you were concerned?  If you had a problem, did they try their best to help you?  These are things that impact how adults look back on their childhoods.  And how I remember my own childhood experience changes through the years as I raise my own kids.  So will our kids' memories.

 

Also, I like to say that I am always failing someone.  With four kids, two elderly relatives, a dog, a cat, a parrot, a hamster, and a husband, there are many opportunities for failing a person or animal, and I do so in one way or another every day.  But I always show up for duty, and I never once ran away and didn't come back.  ;)

[PeterPan]

No, my mother said I wasn't good enough for things and shouldn't do things because I would fail.  My father, ironically enough, despite all his psych labels and perpetual absence and everything else, was the one who said I could be ANYTHING.  He believed the good when my mother, who was there, was too anxious too.  So maybe I'm just like her now?  LOL

 

My overwhelming of childhood?  Being alone.  Hmm, hadn't really thought about that or put it in those terms.  I was alone a lot, because my mother left to go to school and later work.  She wasn't around to have those discussions or feed us those snacks or care.  It was how life was, but you're right that our kids could have a very different memory, simply because we're trying to be around for them.

[FairProspects]

Kbutton, you're saying kids, but I'm curious if this is specifically and especially your older ds?  Barton is telling me, which I explain what I'm seeing, that his full page reading struggle vs. word/phrase proficiency is because of the ASD.  So what you're saying would actually serve to confirm that.  She says that's not a typical pattern for dyslexia alone.  And when I told her about his (sometimes severe) comprehension issues, same deal, that they're the ASD, not the dyslexia.  

 

 

 

Not our experience at all. Both my kids struggle with full page reading and bail sometimes. Less often than they used to, but definitely common enough. Neither is ASD and one is so not ASD that it has never come up once as something to even evaluate. According to our evals this can very much happen with dyslexia alone and is less likely to happen when you can enlarge the font. Sometimes the visual crowding of words on a full page is enough to make a dyslexic just give up.

[texasmama]

(((hugs)))  OhE

 

You are a great mom.  :)

[FairProspects]

(((hugs)))  OhE

 

You are a great mom.   :)

 

Yes, most definitely. :)

[PeterPan]

Y'all are way too sweet.  I think I'm just on a little emotional roller coaster right now and letting the ride slow down so I can get off and get back to strolling.  :)

 

According to our evals this can very much happen with dyslexia alone and is less likely to happen when you can enlarge the font. Sometimes the visual crowding of words on a full page is enough to make a dyslexic just give up.

Hmm, can you tell me how this might look?  I retyped the Barton stories into single sentence per page format, allowing him to read one sentence at a time.  At that point he's losing the flow (the old working memory) from one sentence to the next and not able to answer questions.  He's also then too intimidated to go back and read a full page.  I guess I could do that larger font but let the sentences fill the page instead of limiting?  Hmm.

 

I guess the other thing that I'm unsure of is how many times he should have to read it through to get comfortable.  Is it normal to have to read the stories through multiple times for Barton?

 

Well we've rabbit trailed a bit, lol.

[FairProspects]

They meant by using an e-book on an e-reader and just allowing the child to enlarge the font to whatever size they liked.

[Timberly]

I guess the other thing that I'm unsure of is how many times he should have to read it through to get comfortable. Is it normal to have to read the stories through multiple times for Barton?

 

.

[Lecka]

Hey, OhE, you know I am very satisfied with my son's school program.  A boy we know was pulled to homeschool.  Guess what?  I ran into his dad at the grocery store, and homeschool is going great.  

 

I ran into another kid from his program at the pool (granted this kid seems to have some anxiety issues as well) and the mom told me the kid is so happy, relaxed, and getting along better with siblings, than she has seen since school started.  She said to me "I don't know what I am going to do."  (I think considering homeschooling this kid.)  

 

So I am super-into the school program my son has, it is good for us.  I am truly not interested in homeschooling him or teaching myself to become a special education teacher.  I want to be mom and do environmental and experiential learning experiences that are so valuable.  I do not want to do drills or deal with meltdowns when he does not want to do work.  I am happy to deal with meltdowns when he does not like what is for supper or does not want to go to bed yet -- that is the role I want, that is the role I am good at.  

 

But please do not feel like everything is shiny and wonderful, please do not feel like the grass is greener.

 

Everybody is making trade-offs.  

 

The kids at school are getting what they are getting, but they are not getting other things.  It is just how it is.  I don't think it is okay to totally let go of an area that is weak and just cover it up..... but everybody is making trade-offs, nobody can do everything at the same time.  There is always some area (or domain, lol, to get into the ABLLS lingo) that is getting neglected, sometimes for as long as a year, sometimes for longer than a year.  That is reality.  

 

I hate it, but I have got to let it go and not let it drive me crazy.  

 

I am also not willing to sacrifice my son's childhood.  He must have a childhood.  It is non-negotiable.  

 

This is different from with my older son.  I have some teeny tiny regrets I never think of...... but I could have slowed down, and let him take a little longer to learn to read, instead of being in such a hurry.  But I read things saying "you have got to make catch-up progress" and I was like "okay, I will make him make catch-up progress."  So he did a lot of reading for a while.  And then he caught up and didn't have to do it anymore.

 

With my younger son ----- there is no "catch-up progress."  It is not a matter of "go crazy for a year or two and he will catch up."  This is not his prognosis.  This is not his reality.  So therefore -- he is going to have a good childhood, it would be sacrificing for nothing.  

 

His hard work and therapy are worthwhile, but not out of balance.  And, if he is not ready for something, he can work on something he is ready for.  

 

Congratulations on your scholarship money win!  But it does not mean you are no longer qualified and have to go with public school.  It does not really change anything except to give you more options.  It is no referendum.  

 

If you want to do the school program later, when he is older, it will still be there.   

 

 

[Lecka]

OhE -- Also getting very real here..... you visited a school at the tail end of the school year.  Please do not think it was going so smooth on the first day of school for kids in their first year at the school.

 

It was not.  I promise.  

 

Kids who are in their 2nd or 3rd year at the school may come back from a break and pick back up, or they may have a difficult transition period.

 

But you cannot compare a classroom that has been working on implementing a routine for 7-8 months and compare it to what was happening on a first day or even in the first or second or third month.  That is just reality.  

 

And then you get into -- another real thing -- is it more important to learn to follow a classroom routine, or to learn an academic skill.  Do you want to let academic skills go (in comparison, not totally let them go, but in comparison) so that you can work on following a routine, and have following the routine be the top goal?   

 

I am like -- sure, this is an investment, and it is a reasonable goal for my son (who is so delayed in academics) and something he can succeed with and feel good about. 

 

But there are plenty of people who say "no, that is not what makes sense."  And that is fine and I think they have a good point.   I think it would fit with you if that was your opinion -- it is an opinion I respect.  

[Lecka]

I will also say -- that "woven in social skills."  

 

It can get very rote.  

 

My son has generalized some of it.  Some of it is very rote and restricted to places where he has been kind-of taught to do it.  

 

Now -- I am happy with that.

 

But that is a mis-representation if you go in one day, and you do not know how rote it may be.  You may not know that those kids are saying hi to the 3 kids they were prompted to say hi to for the first 6 months of the school year and now it is just something they do.

 

Now -- I am not saying "it is no good."  I am not saying that, it is good.

 

But -- it may not be as much as it looks like to a visitor.  It may be on the rote side.  If you saw it every day for a week, you might recognize some kids as very rote.  If you had seen some kids for the first 6 months of the year, you might realize how targeted it was instead of this smooth-looking product.  

 

I am not putting it down.  I am just saying -- there is a context for it.  

[kbutton]

I am just saying -- there is a context for it.  

 

Lecka, you are awesome at context--I love that you can bring that to these discussions. It's very helpful.

[PeterPan]

My dyslexic DS10 is half way through Barton Level 6 and he repeats every Barton word, phrase, sentence, and story over and over until it is boringly easy for him.

Sorry to have a hyper-literal moment, but do you mean he sits there reading it (one word) over and over in one sitting?  Or you're saying he goes through the lists multiple times in a sitting?  Or he repeats them every day for a period of days till they are, as you say, boringly easy?

[PeterPan]

Lecka, you're right, I was looking at an end of the year product.  And actually, I wasn't even in the room, lol.  All I've got is what the observer told me.  And you're right, there would be that trade-off of structure vs. content.  He gets more content at home and more structure and school, and I keep trying to figure out ways to up our structure.  I think though there's an element I can't really replicate (and my not even want to) of the must do, crowd, follow the herd thing, where the group is doing it and everyone just does it.  I can't replicate that.  Some people can when they have a little flock of kids, but it's just me and my gaps (10 years apart).  When you try to create structure and routine with him, it's just like you're trying to dream up a way to make evolution happen (insert enough energy into a system and SHAZAM something happens that was greater than the sum of the parts!).  Not that I'm an evolutionist, I'm just saying that's how it feels with him.  It's not like putting up a checklist or worklist or something makes things happen with him.  But you're right, that in reality that's what I'm resonating with, that the herd thing helps him.  It has nothing to do with academics, because in reality we're fine academically.

 

I'll come out of my tree, don't worry.  I just was really shocked at how visceral it was to be in school there and see the adorable stage and go wow, why am I depriving my kid of this...

[Lecka]

My son would have no friends or social interaction (outside of school) if he was not in school.  He does not have enough support and buy-in to have friends or social interaction in any other way.  

 

The gap is too big, even to overcome effort and willingness, in any other way.

 

He has got his sister and brother in a huge way.

 

But his brother is older and has an older-younger relationship with him, it is not an equal terms relationship.  

 

My daughter is great, but she needs to do more than play with my son and hang around with my son.  She plays with neighbor kids who are nice kids, but my son can't go and play with them much at all.  A tiny bit if I go, too.  

 

If I kept her home with him, I would need to provide her with social things, and they would all be things where my son was not really getting anything out of it and not going to have a friend or probably interact with anybody.  

 

For how I was as a child -- I had a wonderful family, but I was extremely isolated in school and apart from my family.  I was extremely isolated and lonely in all of my outside activities and in church.  Except for one-on-one adult activities like piano lessons -- I loved piano lessons.  

 

I am sickened when I see my son not able to keep up with kids socially, when that means he is not able to play or interact.  This is how it usually is.  He can sometimes do things like ride on a merry-go-round with other kids at the park, or go up and down the slide along with a pack of kids.  When he is doing that -- he likes it a lot.  He is not able to do too much more than that without help from his siblings (which he does get a lot of the time).  He is not able to join a group to play very well.  He is borderline on even accepting an invitation to play from a child who is not familiar to him and is not inviting him in a way that he knows to recognize.  

 

Something he has gotten at pre-school and at school that is huge for him ---- there is a lot of encouragement and education about "keep asking kids to play, even if they did not respond before, it doesn't mean they don't ever want to play."  That is something school can do that I cannot do myself, and I have tried and not really succeeded in church and some other informal things.  The gap is too big right now, it takes a lot to make it happen.  At school, too, the paras are desirable people and if they are kind-of helping to set up a bit of play, by 2nd or 3rd grade other kids do know that is what is happening.  But -- the paras are still desirable people.  It is not the same as having somebody's mom out trying to do the same thing.  And the paras get training on how to do it from the special education teacher and from trainings they do.  It is more than just a, say, parent volunteer or teen at church who is making a big effort to be helpful but not getting the result b/c of the lack of time and training.  

 

There are several kids in his grade right now, who are nice to him and try to play with him and play with him.  They are encouraged by teachers, paras, school structures, etc, in this ---- and it is very nice.  It is nice of them, and it is helpful to my son.  

 

But I think of his friends as the other kids in autism resource, that he is having group OT with, and doing morning routine with (when he does morning routine in resource), and who he sits with at lunch (he sits with his para at a table with other kids who have paras), etc.  I think those are his friends.  Even though a lot of things are on the rote side.  Some things are just going to be on the rote side for a sub-set of kids, that is where they are, until their skills improve and they ideally get less rote over time and have more opportunities to generalize.  B/c there is an awareness of doing good prompt-fading techniques and things like that -- but it is not magic.  

 

That is more "why I like the school program."  

 

But I also do not want to be with my kids all day every day, and try to get things done while they are around.  I can only spend so much concentrated time, then I am looking for things for them to do.  I do not think the things I find for them to do are without value ----- but they are not "better" than school, to the point I think "they should do this and not do school at all."  It is just not what I see with what I provide and my stamina.  My stamina is really not my strength.  I have got good stamina for weekends and 4 or 5 hours a day (the time from when I pick them up to bed-time).  I am able to have good time with my kids in 4 or 5 hours a day, I do not schedule them for any activities that get out later than 5:00 or 5:30 right now, and I can use the 3:45 to 5:00 time period, when it was going well for my younger son to be scheduled every day ------ to do something with just my other two kids, or with just one of them, and sometimes they really need that, and they do look forward to it.  That is not something I like to do at all, if I don't think my younger son is doing something good.  I don't like leaving him home at all, if I am going out with one or two other kids.  It needs to happen but I need to feel good about it and not like I am leaving him out.  

 

Another factor is that my son does need a greater language environment than I can provide.  Do I think this is true for 95% of kids?  No.  Do I think my older son or my daughter are better off reading with me and having a discussion with me, as far as their language development, than being around other kids in a school setting?  Yes!  They are getting more language development from being with me.  

 

It is not the case with my son.  He needs to hear a lot of basic language and basic back-and-forth, still.  He also benefits, imo, b/c at times he is in a group where the language level is targeted to him.  

 

At home -- when I am talking to him, I target my language to him.  When it is me talking to my other kids ----- if we are not making a point to talk slowly and look at him for understanding etc, he is probably not understanding enough to be benefiting.  I think our level is high enough we are not bridging it for him the way it would happen if he was around all lower-language-level kids who set the level ------ he is getting language targeted to him, and that is something he benefits from a lot.  

 

But do I think that there are very many kids who would get more language benefit from being in Kindergarten and in a resource room?  No.  Most kids would get way more out of conversing with an adult or having long, open-ended conversations and play-times with siblings and outside friends.   

 

But I think the language environment is really good for him right now.  He has had an increase in his language in the past year, without much focus on language (he still has speech therapy, he still has direct instruction in language, but it is comparatively a lot less).  I am really happy about it and I do think it has come from being in school.  But his language is still low.  But part of having his language be low -- he gets a lot out of hanging around with other kids whose language is low.  He can be friends with them.  It is just such a barrier so much of the time, I want him to have a time and place where it is not a barrier.  I am good at home, but I think that place for him is the resource room more than it is at home.  At home his siblings are talking all the time, and he does not always follow what they are saying.  I have to remind them to make sure they see if he my son wants to do what they are doing -- they do not always give him the chance to think of what he is going to say and then listen to him (they are both very able to advocate for how they want to do something, and they are children, and they want to do what they want to do).  He can really play together with my daughter a lot now, but he can also be at a disadvantage b/c of his language.  

 

It is hard to explain, and I think it is a huge benefit for him to play with my daughter and be around her language.  I think it is something that a lot of kids miss out on, b/c they do not have a child with good language who hangs out with them and plays with them every day after school.  My son has that.  But it is not all he needs.  

 

It is hard to explain -- but these are reasons I like school.

 

A lot of it is the visceral feeling -- my kids are happy here, my kids have friends.

 

My daughter would be fine without school.  I think both my sons are at risk of not having friends unless there is a lot of structure in place to help them.  My daughter will never be left out when kids pair off strictly by their own choice and their own desire to be with certain other kids.  She is great at that.  Both my sons are missing something there, and it is hard to explain, but they like to have friends, but they do not necessarily know how to go about it the way my daughter does.  It is something I really see as "this is how I was" and I never want them to have that feeling of "well, there go all the other kids" that I would have at church and at social gatherings where kids were supposed to entertain themselves and play.  I mean -- to have that feeling sometimes is fine, but it should not be all the time.  

 

The counterpoint for me is how happy I was on those few times when I was part of a group of kids and things were going well.  I loved that feeling.   I want that for my kids.  

 

Edit:  Also things changed for me when I was in orchestra in middle school and mid-high and high school.  It was really good for me -- the structure was there for me.  So I have this feeling like -- it is possible.  It is not a guarantee, but it is possible.  

 

 

 

 

[texasmama]

Lecka, you have a really insightful grasp on your son's needs and how to meet them.  I appreciated reading all of that.

 

 

[Timberly]

Sorry to have a hyper-literal moment, but do you mean he sits there reading it (one word) over and over in one sitting?  Or you're saying he goes through the lists multiple times in a sitting?  Or he repeats them every day for a period of days till they are, as you say, boringly easy?

 

 

.