New here - Apraxia and reading?

[Guest Vallere]

Hi! Quick intro - 4 kiddos, one on the way. My boys are almost 9 and almost 7, my girls are 4 and 2. We've homeschooled from the start. My second child is the one with allllll the issues. When he was just shy of 3, he was diagnosed as Growth Hormone Deficient (leading to nightly injections) as well as an asymptomatic Chiari Malformation. He's always had articulation issues. We had him evaluated at 3yo, but were told by the school system that because he could physically make all the age appropriate sounds (even though he didn't use them properly in speech and was almost completely unintelligible) he didn't qualify for services. The next year we moved overseas, where he did get some ST, but because of the accent, it didn't do a lot of good, unfortunately. I did work with him at home between sessions, but still very little progress. We moved back stateside just over 2 years ago and the school system would only give him 30 min once a week of ST, which we've done, and again,  worked at home, but still...very very little progress. A few months ago we finally got a formal ADHD diagnosis (we've known for a while, but didn't seek a formal diagnosis until behavior issues were really negatively affecting siblings and his relationship with his dad and I). Meds have made a HUGE improvement with his impulsiveness, and he *asks* to do school now, doesn't beat up his siblings anymore, etc.

 

Our insurance changed, and we now have the option of getting ST through the language lab at the local university twice a week for 50 min each time. We just got back the formal eval and ...I knew it was going to be bad, but it's worse than I had expected. He's classified as severely articulately disordered. He had deficits in almost every area they tested. He starts many, many words with the /h/ sound, so that pretty much anything that rhymes sounds the same....cat, sat, hat are all hat. "I want a hink in my hup" (I want a drink in my cup). He turns 7 in Oct, and most adults have to ask me or his older brother to translate him, and he's started getting really embarrassed when other kids ask my older son, " Why does your brother talk like that?"

 

Anyway, long story...but when I spoke with the SLT after his eval, she asked if anyone had ever asked us about apraxia. She said he had some red flags, like not being able to "hear" that he's saying things incorrectly. For example, he'll say hat (cat) and I'll ask him to make the /c/ sound and say c-at cat...and he'll say "That's what I said! Hat!"

 

Even though he really excels in math, loves science and nature, and has such an amazing 3D thought process (he creates the most awesome things with LEGOs, Minecraft, or just pictures he draws...even moreso than my 8yo), he has a hard time still remember letter names. I understand he has a hard time with the sounds...he can't make some of them, and just says most of them incorrectly, but even still I'd think he would know the alphabet. (my MIL loves pointing to that to show how homeschooling is a horrid decision...).

 

My real question is....what DO I do for reading? I understand that a phonics approach is just not going to work. We used HOP and Starfall.com for my older son and he did fine, but that's not going to work for this guy. I picked up Teach Your Child To Read in 100 Lessons, and we are about 20 into it. He is doing ok at remembering those sounds (even if he can't say all of them correctly) and he's trying so hard, and actually reading a few words, which is a huge boost to his confidence, but I don't know if it's the best approach. I feel like a more sight reading approach, where he just memorizes the words, might be best, but I honestly have no idea where to start with that. He's not formally diagnosed with apraxia, but the SLT said she was going to really do some digging to see if that's what he's got. I just feel like at almost 7, I'm losing the window for him to learn to read, he's getting really sensitive about it as well, since all his peers can read (it comes out with Scouts and VBS, for instance) and it's getting embarrassing for him. I want to help my guy, but I'm at a loss :(

 

Any suggestions? Books I could read, or curriculum for reading I should look into?

 

Thank you so much! I'm a bit overwhelmed, and sad that my guy seems to just have so many knocks against him :(

[Lecka]

So he is able to blend in 100 EZ lessons?  That is good, very good.  If he is able to blend and he is remembering those sounds (the ones you have worked on more intensely vs. the ones where he has been exposed but not picked it up through exposure)..... I would be more in favor of continuing with an explicit phonics type of program, and NOT switch to sight words.  B/c -- it sounds like he is having success, just that he needs a lot of practice and explicit instruction.  

 

I also think you might ask the speech teacher what her thoughts are about reading instruction.  She may have some thoughts for you or ideas for modifying certain things for him (in general or specifically).  

 

It sounds like, maybe, he is hearing the words correctly in his head, that he is properly sounding out, but having trouble in articulating correctly.  If he is -- that is good, when his articulation improves it might just transfer to his reading practice.  

 

I don't know if 100 EZ Lessons is the best approach ---- but you describe him as happy to be making progress with it.  Sometimes a program may not be THE best, but if a child has a positive association with it and is making progress, that can count for so much, it is worth continuing on with it.  

 

If you see him making steady progress -- I think that is good.  If you see him not making steady progress, even if it is slow, that is different.

 

Nothing against Starfall and HOP, at all, but just b/c they have not been sufficient, I think it does not mean it is worth throwing in the towel and going to a sight words approach, I think it is time to look for a more explicit phonics program, possibly, and accept that it may be slow going.  But slow going is okay, if it is just not working out then that is different.  If there is no progress.  

 

But I do think you should ask his speech teacher, also, how his phonological skills are and his phonemic awareness skills, and if she thinks that they need remediation prior to reading instruction or not.  It sounds like it may be "not" if he is in Lesson 20.  Though I could be wrong, I only have a vague memory of what he would be able to do in Lesson 20.  But imo getting to Lesson 20 is very good!  

 

You also need to speak to scouts and church, and look for ways to keep him from being embarassed.  I have seen suggestions here.  It can be the difference between a worksheet being individual or being done in a small group with one recorder and one reader.  It is not like it is impossible or a huge imposition.  I don't know all the good ideas off the top of my head, but I have seen a lot that I think are such good ideas.  

 

I think it might be that he does need another reading program, too, but maybe it could be in addition to what he is doing that is going well.  I think it is really psychologically important to kids a lot of times, that the book comes out and they feel like they are going to be able to do it and able to do a good job.  

 

 

[PeterPan]

Vallere, that's a complicated situation.  We've had another person on the boards here who went through a lot trying to deal with chiari malformations.  I think if you do a board search you'll find her posts.  

 

When you say you just got a formal adhd diagnosis, you got that through a ped, psychologist, neurologist, developmental ped, or?  I'm asking, because with what he's got going on he should have a full neuropsychological eval.  That's the only way to sort out these questions on reading.  He should have a full eval.

 

Now on the speech, my ds has moderate verbal apraxia, and that's not a suspected diagnosis.  He got diagnosed at newly 2 by an expert who treats only apraxia all day long.  So I want to say, gently, that you have a novice doing your eval.  She's not qualified to tell you if it's apraxia or not.  Apraxia is a motor control problem.  There can be phonemic awareness issues with it, yes, absolutely, but at the heart of it there is praxis, motor control.  

 

The best therapy for apraxia of speech is PROMPT.  You can go to the PROMPT Institute website and use their provider map to look up options in your area.  Because of the complexity of what you've got going on, you need to look for someone who is certified or an instructor if at all possible.  Then what I suggest you do is CALL them and talk with them.  Tell them you have the chiari malformation and articulation delays and are trying to distinguish if there is praxis involved.  Let them talk you through it.  I don't know anything about CM to tell you at all if there's typically praxis involved.  There could be, dunno.  I do know that you're not going to sort it out with a novice who's looking it up in a book.  An apraxia specialist who does PROMPT and is certified not only has their masters in SLP but then has done multiple other courses and tons of hours to get certified in just that.  It's a very specialized technique because traditional therapy, by and large, struggles to be effective for it.

 

The good news is that *if* it's apraxia, you have a great shot of making progress.  PROMPT is amazingly effective for apraxia.  The bad news is, I can't guarantee you it's apraxia.  I suggest you call a PROMPT therapist and talk it through with them.  I drive 2 1/2 hours each way to get to our certified therapist.  If you are looking at a big drive, call all the options and assess.  You might have more options than you anticipate.  Sometimes people will travel a long ways and do a week of intensive therapy.  Just depends on the situation.  We've done that before too.  

 

As far as the reading, sigh... Well you could sort out the speech question first.  If he had a psych eval, hopefully they ran a CTOPP.  How was that?  In general the advice for kids with apraxia is not to ask them to say anything beyond what they can articulate accurately.  You can work on phonemic awareness with the Earobics software.  This is out of my league, but doesn't CM involve significant brain damage?  It's seems like a neuropsych who has experience in CM is going to be your best bet for getting good counsel on how to proceed.  

[PeterPan]

http://forums.welltrainedmind.com/topic/441725-dss-mri-is-being-reviewed-at-the-chiari-institute/

 

Here's a thread to get you started.  The advanced search feature on the board works well.  You can search by username and read other posts by that person.  You can also use google to search by typing your search terms and adding  site:welltrainedmind.com    So in your google browser you could put something like "chiari malformation site:welltrainedmind.com" and get the results.

[Guest Vallere]

Thank you for the feedback so far. OhElizabeth, our son was diagnosed ADHD by a Child Psychiatrist. My husband is a Child Psychiatrist as well, and chose this guy particularly as he was one of DH's mentors, so I'm very confident in the assessments that have been done. The SLT ran a pretty thorough  battery as well (I'll find the eval and copy some of the findings). His Chiari was an incidental finding and is asymptomatic from what we can tell. He had to have an MRI for his Growth Hormone Deficiency diagnosis to rule out a pituitary tumor, and they just happened to find the Chiari. He has no gross motor issues, no headaches, no balance issues, which are the typical CM symptoms...in fact, he's my MOST athletic child! He's nothing but muscle, climbs like a mountain goat, lol. We found the CM almost 4 years ago, and we've had regular MRI's to check progress on it, and as he's grown with the Growth Hormone treatments, the CM has actually shrunk. There is no evidence of any brain damage from it. I'm already a member of a few forums for GHD and CM, so that's totally a non-issue on our radar.

 

Back to the 100EZ lessons...he doesn't  blend well at all. For instance, if he's sounding out cat, he'll say /c/.../a/.../t/............/h/.../at/ Then I'll back him up at say /c/ again...and we'll go through that 2-3 times until he realizes it should say cat, but he'll still most often say hat.

 

I think DH must have taken the ST eval to work with him to look over, because I don't see it at the moment, but I know they said he had poor phenomic awareness, couldn't pick out the missing sound in words, was missing a lot of the blends (for instance, he can't physically say /sh/...his tongue just will not curl up on the edges to make that sound. He did well in the numeral memorization...I think up to 7 digits, but very poorly in all the articulation areas.

[PeterPan]

Yes, what you're describing with his tongue would make you question motor control.  That's the kind of thing you're looking for.  

 

Here's the PROMPT provider link.  http://promptinstitute.com/index.php?page=find-a-prompt-slp  They have separate maps for instructors, certified, bridging, and intro level.  Try to look for someone who has at least done Bridging.

 

Our SLP has everyone go through Earobics.  We've done some LIPS, and while it is helping, our SLP begged us to stop saying the letters in isolation.  Because of the apraxia it was messing his speech up.  So now we do it only by touching.  It definitely sounds like you need to get in some ST and work on phonemic awareness.  For my ds, his ability to distinguish the sounds is directly linked to his ability to say them.  IE as we get the ability to say them, the ability to distinguish them comes.  He literally just started distinguishing vowels in the last month, a huge, huge shift.  

 

That digit span of 7 is incredible, wow.  I wouldn't have expected that with adhd. You'd expect to see executive function deficits and working memory issues.  I'm surprised.

 

I enjoy keeping up with people's stories of when they pursue PROMPT, so if you do I'd love to hear how it goes.  There's also an apraxia FB group that is moderately active.  You get a diverse blend of perspectives that way.  :)

[Guest Vallere]

His ADHD is more adHd lol...It's more impulse control. He can't stop jumping, hopping, running laps around the house, roughhousing, smacking, hitting, screaming - just random outbursts (which are WAAAAAY better when medicated)....but he's smart as a whip, has an awesome working memory (like I mentioned earlier, my sister who is an architect is blown away by the things he makes in Minecraft and with LEGOs.) He's a natural problem solver...engineer in the making. His vocabulary is quite large, he's very mathy (he's doing MUS Alpha and is often bored because he thinks it's way too easy). He has good handwriting...maybe better than the 8yo's. It's just the articulation. Unfortunately, that's what people hear, and they assume he's dumb, or he'll just clam up around strangers because he doesn't want them to know he's "a bad talker" as he says, and that just reinforces their assumptions because he won't answer questions, or covers his mouth when he talks :(

 

I appreciate all the input and ideas. I'll talk to the SLT next time about LIPS and PROMPT.

[PeterPan]

If the SLP isn't on the list for PROMPT, they aren't PROMPT-trained.  I'm being really specific about that, because people will say they "do prompt" and what they mean is they gesture or use some form of cuing.  This happens a lot more than you'd think, and it keeps you from discriminating and realizing the person isn't qualified to do the therapy.  PROMPT is not prompting.  To get PROMPT, you need someone who has done the formal training and is on the provider list. You also don't want someone who just did the intro/level 1 training.  It's not enough to understand the method completely.  You want someone who has done Bridging (the level 2 training) and is working toward certification or someone who is already certified if possible.  I guarantee you your experience will be totally different.  When my ds started PROMPT, he went from no speech to SPEAKING the very first day.  

 

Here's some recent video of him in therapy.

 

 

 

Here's a video with info on PROMPT.  

 

https://www.youtube.com/watch?v=oa9KOMtY-N0

 

Our therapist is an instructor for PROMPT now and she's AMAZING.  

[Jennifer132]

My dd 3 has cerebral palsy and dysarthria (not too different from apraxia). In the distant future I'm planning to use a sight word program like I See Sam for reading, because, as you said, phonics is all about sound pronunciation. So I would go with a whole word program. You might also look at oral-motor therapy if you think some of his intelligibility is from oral-motor deficit (my dd's is). Also, if people truly don't understand him, you may look at a communication device for him. My dd is likely going to start using one this winter because though she has a lot to say, no one can understand it. We are looking at an app called ProLoQuo. Insurance will usually cover the app as well as an iPad for it.