[2boyzmama]

So I thought I hit the jackpot when I was able to make contact with the renowned expert in Connor's syndrome and found that he is anti-interventions and anti anything that makes a child medically dependent if at all possible, has done extensive research to back up his alternative treatments and therapies, and even answers emails rather quickly! Here I've been day dreaming about moving the whole family to Syracuse, NY just so we can have him as Connor's dr.

HOWEVER...I learned today that he considers ASL to be medically dependent, and is against oral motor therapy (I'm still trying to figure that one out...) It's true that right now, Connor relies on ASL almost entirely for expressive communication, but we are working very hard with him in speech therapy and with Omega supplements to get him to acquire verbal speech. We see ASL as a wonderful gift, a tool that our family is using to overcome frustration and continue the learning process of toddlerhood until he is able to speak verbally (expressive speech is almost always significantly delayed in 22q kids, and he will likely need surgery to correct VPI sometime in his future). We do not see it as handicapping him, or as holding him back. We always sign AND speak, he is in two speech therapies, we are a verbal family, he has speaking/hearing friends as well as deaf/signing friends. ??? I'm not seeing an issue here...

Anyway, this is really just a vent

 

[supervee]

I don't think two educated people will ever agree 100%. As long as it's not a deal-breaker for the doctor, and he doesn't harp on the fact you're doing it, then seems like you've found a good thing.

 

[supervee]

Oh, gosh, just realized that sounded really bad. I meant "educated" like "educated in a subject area you are discussing" not educated vs. non-educated. Cheese.

 

[bdavis337]

Why would he be against oral motor therapy AND asl? That doesn't make sense to me. No signing AND no help with motor skills for verbal speech? I dont' get it.

 

[Aridel]

Quote:

Originally Posted by bdavis337 Why would he be against oral motor therapy AND asl? That doesn't make sense to me. No signing AND no help with motor skills for verbal speech? I dont' get it.

I agree that ASL is important, and should not be viewed as a medical tool. It's a complete and beautiful language, and should be given the same status and respect as any other language.

Oral motor therapy is highly controversial as there are no good studies showing it works, and a few small ones, as well as neuro research showing it is unlikely to help verbal skills. This refers to non-speech oral motor exercises. Basically, the people who disagree with oral motor will tell you that your brain stores information for speech movements in a different location than non-speech, as shown on brain scans. Speech exercises working on strength are mostly useless since not much strength is needed for speech - more coordination - and since most oral motor exercises don't follow good muscle strength protocols (work to exhaustion etc). As far as the coordination, speech movements are faster, smaller and more precise than most exercises people try, and those exercises don't seem to translate to better speech. You can end up with a kid who has worked through a straw or horn hierarchy to the end, but unless they've been working on speech-based activities they may not progress.

I have to say I am in the camp of not believing in oral motor, as related to speech. Further evidence could change my mind. It can help with drooling, definitely! But working on blowing skills has only ever seemed to help dd's blowing skills, which makes sense since both the brain activity and physical movements are never going to be the same for speech vs. non-speech. Sorry for the book on this stuff - I don't have the link now but Gregory Lof has written up info on this issue a few times. This is another, less detailed explanation.

People who don't like oral motor therapy for speech goals tend to focus on getting communication started - which is why it's so surprising to me this Dr. is so against ASL! There is work on vocalization, and imitation, but I've had SLPs who are very specific. If they're having dd imitate oral movements it is to work on imitation skills. If she is working on verbal skills, I should be hearing sounds or sound attempts, you know?

I have yet to find a doctor who I 100% agree with - I think everyone just has their own experiences lead them to what they think is best for SN kids. And as you can tell from my long comment, I can see how these things can sink in, and become an essential part of your view of How This Should Work, but hopefully doctors can take a step back and see that families may have a different vision - I can hope anyway!

 

[harpertrance]

that doesnt make sense at all? how can one be against ASL? Its a form of communication! Is he against braille too? Sheesh. ((hugs))

 

[2boyzmama]

I did more research last night, I own this man's most recent published book, so I scoured through it again to try to find WHY he's against this, and WHAT he instead utilizes. Here's the jist of what he says for oral motor therapy:

"When speech is so severely impaired and unintelligibl, clinicians often suspect that the child with VCFS is apraxic. Although often diagnosed, apraxia is either not found in VCFS, or at most is extremely rare. Most clinicians who do not have special training in speech patterns associated with cleft palate and VPI do not recognize glottal stops and think the pattern is one of consonant omissions. This is an easy error to make and the judgement is reinforced by the fact that the speakers producing glottal stops tend to produce very litte lip, tongue, and facial movement because the sound is being made at the level of the larynx, eliminating the necessity to move the upper articulators. Failure to recognize glottal stops as a sound and therefore a sound substution leads the clinician to believe that there is a motor planning problem (apraxia). Therapy approaches and the prognosis for treatment of apraxia are different from those for a compensatory articulation disorder. The articulation impairment typical of VCFS is almost always completely correctable."

So he's saying that children with VCFS usually develop compensatory speech that is unintelligible, and the way they compensate (with their larynx, because their pharynx is usually affected by VPI) makes it "appear" that they have an oral motor planning problem, when in fact they don't. So oral motor therapy won't be effective. The child may start moving their mouths more, but they still won't speak.

This is exactly what is happening to Connor! He used to have almost no movement of his tongue or upper lip (we had to surgically correct a problem with his upper lip), and he was completely unaware of where thinges were in his mouth. Through oral motor therapy, he now can control his tongue, has some movement of his upper lip (very limited), and seems much more aware of his mouth in general. But he's still not talking. We were close to getting a diagnosis of Apraxia for him (I was so sure he was getting the diagnosis, it's already in my siggy!) But what Dr Shprintzen is saying makes some sense, and absolutely is something I need to bring up with Connor's speech therapists.

As to why he's against ASL, I really have no idea. The only thing I can think of is the fear that he'll never talk because he'll rely too heavily on ASL, which is bunk because we are a verbal household and he has an older brother that if he ever wants to be heard above, he WILL talk. Or maybe Dr S sees having to rely on an interpreter as a medical dependency, which there's some truth to, but we saw it as a necessary thing until he can talk!! He's non verbal, but has 90 signs, I can't imagine not having those signs!!

 

[AndVeeGeeMakes3]

This is very interesting.

First - as to the motor planning (apraxia) vs. glottal stop. VeeGee completely uses glottal stops to substitute for sounds - even when she "has" them or has, through oral motor/speech therapy, acquired them. The way that she says "baby," for instance, is to make two sort of hard-g-like sounds that aren't really g-sounds but are glottal stops. 'Course she doesn't have b's at all. Here's what makes me think that there is a combination of apraxia and VPI at work here: I'll exaggeratedly say, "Say, mmmmm-baby" to demonstrate the bilabial b. She'll study my face really hard and say "Mmmmmm-gi-gi." This, to me, signals motor planning. That's what her therapist thinks. Does that seem right?

As to the blowing and other oral motor skills, I absolutely know that they help her. For one thing, her vocal power (the amount of air that she's able to put behind vocalization) has increased significantly with the blowing. Also, she does speak more, I think in part relative to the oral motor, because it has increased her coordination. Because she does not use her mouth for anything else (eating), she has very little movement experience.

Basically, our approach has been to hit at the problem from every angle available to us: oral motor, regular speech, occupational (feeding) therapy (which we also think has helped her speech), nutritional therapy (fish oil!!!!!), and surgery. I'm sure that at some point we'll have to start picking and choosing, or that we could get to a point of diminishing returns. But we're not there yet, and she's really thriving and her speech improvements pretty much stun everyone every time they see her (not just therapists), even from week to week.

I think that we special needs moms, like other moms, but more so, are kind of like general contractors. We have to kind of know what's going on in a global sense and then find people to execute different parts of the "project" as appropriate to each one's particular expertise. That's one of the problems (and advantages) with medical specialization (which is relatively new). Each doctor has his/her own little special interest, their own little (frequently very narrow) territory, largely to the exclusion of other possibilities. This puts us in a position of having to make decisions that sometimes pit specialists against each other. I just have to hope that it becomes an iron sharpening iron situation and that the one who can make the best, most accessible argument, is the right one.

In the end,

.

 

[momtoalexsarah]

We've done a tonne of motor planning work with Megan - and yes it dose work in kids with VPI - but not in the traditional way.
The VPI is a result of poor muscle allingment/structure/strenght or a hole(like in a full cleft palate)
Megans VPI was not acctualy caused by the small hole in the soft palate, but the non funtional muscle structure above that.
In Megans ST we acctually purposly taught her how to do the glutteral stops - this was a stop gap till she had the surgury to fix the problem but also showed her how to compensate and how to make the muscles work (oral motor planning) this was critial after surgury when she had to relearn how to move liquids and food in her mouth - she spit a pile of food back out in the first 3 weeks because she couldn't figure out how to move it back and swallow it each time we changed a texture.
She still does do a glutteral stop in the speech, we will have to unlearn that but it is not a huge concern right now there will be time for that later after her sound repetoir gets better. BTW glutteral stops can give very clear sounds - especially in or at then end of words Megan says UP and UPPY (puppy) as clear as a bell useing a glutteral stop, there is no question what she is saying.
I can see where a VCFS child would not have a "true" apraxia, They thought for the longest time that Megans also had severe apraxia but it isn't, it IS be "apraxic like "because there is poor motor control bacause the muscles don't function as well - the message is getting there, the muscle just can't respond as strongly or as well because of a structural defects or a weakness (like hyptonia in them - there is a different term for it I just don't remember off hand)

If signing is working and you can still get some oral speech then that is great - the ASL made Megan completly non verbal and selectivly mute so it just wasn't going to work for us. I think that in a child that is willing to use both and has the resources availble then it may be a great tool, but it isn't for all kids. I find it odd that he dosn't want it used at all though. Megan is acctualy using a few more signs now, but it is with the word to re-enforce what she wants - this is what she would not do before.

 

[AndVeeGeeMakes3]

I can totally see VeeGee's mind at work when she's trying to say something, and this also leads me to believe in the apraxia dx. She WANTS to say xyz and her mouth is moving, but it's just not happening. Also, for instance, she can stick her tongue out (actually does it too much when she's running

) but when I say, "Stick your tongue out." She will move her tongue around inside of her mouth and I can just see those little motors running in her brain . . . and the tongue just can't come out. So, apraxia or "apraxic-like?" I don't really care about the dx, of course - the treatment/exercises seem to be the same.

 

[2boyzmama]

I'm glad both of you responded, I was actually going to send you a PM to tell you that I had quoted this part of his book for you, because I knew that it either might apply to you, or that you had already read up on it and might have something to say about it!!!

I'm finding this all fascinating...Connor is younger than Megan and VeeGee, so we're a little behind you guys in therapy. I'm always anxiously reading your posts and experiences to see if it applies to Connor!!!

Dr S publishes his new book this summer, hopefully it will have more info in it about what therapy he recommends...

 

[AndVeeGeeMakes3]

Oh, and like Megan, (and I've posted on this before) ASL had a detrimental effect at the worst and a neutral effect at best. That is TOTALLY NOT to suggest that you should "cease and desist" because it's working for y'all. We're after communication first and foremost, right?

Who knows what our path would have looked like if VeeGee had been living with us since birth. It's so hard to know those things, and it's almost too painful to think about them. There's a big part of me that looks at Connor's experience and feels sad. Could I have helped VeeGee be able to breast feed? Did she HAVE to have the trach and feeding tube? I really don't know. My gut actually tells me that both the cleft and the severity of the retracted jaw did, in fact, make those things necessary (though I think I would have certainly worked harder than her birthmom did to facilitate bfing because of the oral motor benefits that I'm sure, at the minimum, it provides).

I guess I say that to say that there are SO MANY ways to go about a treatment plan. And that, even if we make "wrong" decisions, like the ones that we had to pick up after, a kid can still thrive in the end. In most ways, you'd never know that VeeGee was/is as far behind as she was/is (until you lift her shirt and see that danged button). I know it's easy, and hard not to, agonize over every single decision. But I'm having to kind of give myself a break and let instincts do some of the work. Do I trust her surgeon? Yes. I trust him mostly because he's willing to sit down with me and treat me like an intelligent person. I don't know. Is that a good enough reason to go forward with this surgery? I hope it is. I trust it is. That's the best I can do.

(sorry to go all me me me here!)

 

[queencarr]

Aridel's explanation about why OM therapy is not recommended is what I have been taught (and harped on!) by all of my professors (I'm an SLP grad student). One has even done research on it ,showing that it doesn't work. That being said, I know what I saw in my own child after YEARS of speech therapy and we had a dramatic improvement in a very short time (less than one summer) with it. We did not follow the horn and straw hierarchy plans 100%, but modified it to suit my and our SLP's philosophies. We did 15 minutes of sensory stuff, followed by 15-20 minutes or so of horns/straws, then the remainder of a 45 minute session was spent on traditional Van Riper artic drills, etc. We did about 15 minutes at home per day as well. So, my own perspective is somewhat skewed. I toe the party line for school, but would be inclined to try it on certain clients when nothing else seems to be working, since it can be done quickly (and mainly at home). Although I have seen the evidence that shows speech and non-speech processes in different parts of the brain, I also have to wonder that for kids with feeding issues, certain OM issues, etc. if that normal "programming" that takes place during early feeding skills gets goofed up, since pre speech feeding skills can be related to speech skills. Don't know, just pondering and offering a personal perspective that I question constantly (and to myself) in class

. FWIW, he never had a formal dx of apraxia, but it was suspected and I feel pretty convinced about it. He has mild CP, so there were definite motor issues--mainly fatigue with repetition, rt side weakness, mixed muscle tone, and SID--although no formal dysarthria dx either, just had a dx severe artic disorder secondary to CP and phonological processing disorder. Our insurance covered with just that, so we didn't worry about labels too much overall. Anything secondary to CP got covered

Quote:

First - as to the motor planning (apraxia) vs. glottal stop. VeeGee completely uses glottal stops to substitute for sounds - even when she "has" them or has, through oral motor/speech therapy, acquired them. The way that she says "baby," for instance, is to make two sort of hard-g-like sounds that aren't really g-sounds but are glottal stops. 'Course she doesn't have b's at all. Here's what makes me think that there is a combination of apraxia and VPI at work here: I'll exaggeratedly say, "Say, mmmmm-baby" to demonstrate the bilabial b. She'll study my face really hard and say "Mmmmmm-gi-gi." This, to me, signals motor planning. That's what her therapist thinks. Does that seem right?

This sounds more like a phonological processing disorder than apraxia to me, just on this one description. This is the classic example of one, actually, that my teacher uses for kids with repaired cleft

(Continuing to use glottal stop for everything even after the sounds are acquired post repair). She also talks about, though, that phonological disorders and apraxia can overlap, and are particularly hard to treat. Classic distinction between apraxia and phonological disorder is that apraxia has inconsistent errors (says it one way one time, another way the next time) and groping (it looks kind of like someone who stutters trying to get that first sound out).

Quote:

Also, for instance, she can stick her tongue out (actually does it too much when she's running ) but when I say, "Stick your tongue out." She will move her tongue around inside of her mouth and I can just see those little motors running in her brain . . . and the tongue just can't come out.

Apraxia is funky--it can be verbal or oral, and not necessarily both. Can also be limb, too. Since this is a non-speech movement, it would actually be oral, not verbal. Not sure if that is helpful, but it is treated differently. Officially, speech based for speech, non-speech based for non-speech. But see above

Hope I'm not butting in

it just related to what we have been going over this semester and my brain is turning and turning

 

[2boyzmama]

THis is all GREAT STUFF!!! Keep it coming!!!

Connor's receptive language exploded after his PICC line last summer, it truly was his hearing loss caused by hi *really* severe infection that was holding him back. Once he could hear, and learned to "trust" his hearing, his expressive jumped from profound delay to age appropriate in about 6 months. Amazing!!! He still has mild hearing loss (30-35dB or so) but certainly has functional hearing.

His oral motor skills appeared to be completely lacking, and we weren't sure if it was physical (hypotonia) or neurological. We did do surgery on his upper lip (he had 5 labial frenulums, so had no movement of his lip, it was literally attached to his gum line) and then through oral motor therapy he has learned to be aware of his tongue, his lips, and he is tracking foods so much better in his mouth that you'd only know he has dysphagia if you really know what you're looking for.

Yet still no talking. He has some sounds, and he uses some of his sounds to form word approximations (mama, ball, dada, more, and duck...but more sounds just like a one syllable mama [mmmmmaa!], and duck sounds just like a one syllable dada, so very much just approximations) His "d" sounds aren't quite "right", as if he's not using his tongue to make them. He can suck through a straw, blow bubbles (sort of!), make a kissing sound...so it appears that he's come a long way with oral motor.

I don't now...this is only my list of things to talk to the dev ped about when we see her next week (as is his weight gain...I'm continually frustrated with the disparity of information out there about 22q and weight!!!) It seems to me that oral motor therapy isn't HARMING him, but also might not be what he needs...I'm just not sure what it is that he DOES need!!!

 

[2boyzmama]

Quote:

Originally Posted by AndVeeGeeMakes3 There's a big part of me that looks at Connor's experience and feels sad. Could I have helped VeeGee be able to breast feed? Did she HAVE to have the trach and feeding tube? I really don't know. (sorry to go all me me me here!)

No sense in crying over something you couldn't/can't control, you know that, but I know that I would be doing the exact same thing. I wish VeeGee had been with you from the beginning, too! YOu're such a wonderful mom to her! I HAVE been with Connor from the begining, and I STILL question what we've done/not done...all the time!!! That's just part of this journey I guess...the "what ifs".

 

[momtoalexsarah]

Quote:

Originally Posted by AndVeeGeeMakes3 I can totally see VeeGee's mind at work when she's trying to say something, and this also leads me to believe in the apraxia dx. She WANTS to say xyz and her mouth is moving, but it's just not happening. Also, for instance, she can stick her tongue out (actually does it too much when she's running ) but when I say, "Stick your tongue out." She will move her tongue around inside of her mouth and I can just see those little motors running in her brain . . . and the tongue just can't come out. So, apraxia or "apraxic-like?" I don't really care about the dx, of course - the treatment/exercises seem to be the same.

This is what Megan does as well - we tend to call it "word rolling" because it's as if she is rolling the words in her mouth and the wheels turning in her head. After that she will either try and say it or throw her hands up in and "I don't know" sign.
There are some sounds that she will make while talking, but can't produce upon request - that is more like apraxia.

D and B sounds are good, even if they are not perfect that may mean that his VPI is small. Megan still has no D at 4 months post surgury and B and P are only within a word. Still no T - although we have S,F,V,J, and SH now that we didn't have before. She is easer to understand, but if she gets talking fast, or gets lazy in her speach it all goes to pot.
She had an altrication with our dog today that ended up with her needing stiches and we where trying to figure out what happened and asking her was nuts she just couldn't get the words out right. (appearantly - From the 4 adult and her 2 siblings that where within 15ft she stole a ball out of the dogs mouth , dog jumped to get the ball from her hand lunged at the ball and got her - long story short not fun and we have to figure out what to do with the dog)
It was certainly nice to be able to get a little information out of her, but of course when the doctor asked she wouldn't respond and when I tried the doctor couldn't understand what she had said - at times it can be very frustrating but this is way off topic now.

 

[gsmom]

This is very interesting to me. Thanks for all the great comments ;-) I use oral motor exercises (not like tongue pushups or anything, but activities to raise awareness of where articulators are in their mouths) to help kids figure out where things are. If a kiddo doesn't know where their lips are or that they can put them together, then me trying to demonstrate or tell them to "put their lips together and say mmmm" is fruitless. I use oral motor activities to give them sensory and tactile input to then transition to doing a speech sound (I have had kids clear something off a spoon then try "mmm" as the spoon is coming out).

 

[fairejour]

1. No, you'll never find anyone who completely agrees with you. Hubby and I don't even always agree, and we share the child in question! Why would a stranger understand??

2. Watch out for the apraxia thing. My daughter's speech therapist says it is way over diagnoised with children with a hearing loss. They have to experiment to get things right.

3. ASL...here is what I have to say. I have never met a person who wishes they had never used ASL, but I know HUNDREDS who wish they had used it sooner.

My advice is some that another mother gave me years ago, "Use experts for what they are good at. I would never ask my SLP for advice on ASL, just like I wouldn't ask my Deaf mentor for information on AV therapy."

 

[half-pint]

This is a great discussion! Thanks for posting a more detailed explanation of why the current methods of SLP training discourage oral motor therapy.

My son has hypotonia, had feeding issues (NG tube first 6 weeks), no ability to BF, and has few words. He is almost 3. He can say the first sound of about 15 letters but no two-syllable "words". Our SLP does not do OMT and I have not understood exactly why. He clearly has gross-motor planning issues as well as oral motor planning.To me, it makes sense to try to get him to figure out "how" to use his mouth. It took him forever to stick out his tongue, blow,etc. We are now trying to teach him to spit so he can brush his teeth better and not swallow the toothpaste. I never realized how hard it was to teach someone to spit!
He is not big at imitating and I often have to physically move his body to show him how to do something before he can do it. This is why I think oral motor stuff can only help him. Of course, it is easy enough to do these things at home but I now have a clearer picture of what the arguements are against it. We get such limited speech therapy that I would rather have her work on stuff only she has the knowledge of and I can supplement with the OMT.

 

[2boyzmama]

Quote:

Originally Posted by momtoalexsarah She had an altrication with our dog today that ended up with her needing stiches and we where trying to figure out what happened and asking her was nuts she just couldn't get the words out right. (appearantly - From the 4 adult and her 2 siblings that where within 15ft she stole a ball out of the dogs mouth , dog jumped to get the ball from her hand lunged at the ball and got her - long story short not fun and we have to figure out what to do with the dog) It was certainly nice to be able to get a little information out of her, but of course when the doctor asked she wouldn't respond and when I tried the doctor couldn't understand what she had said - at times it can be very frustrating but this is way off topic now.

Goodness!

It sounds like a true pet accident, unless this dog has a history of being rough with the kids. We have two big dogs, we've never had an incident, thankfully, they're both well trained and the boys seem to understand the boundaries we've taught them. We also have a cat, and we intentionally did not declaw him, I figure the poor cat NEEDS to be able to defend himself against two little boys, and a scratch now and then will only reinforce our teachings that you have to be gentle to animals!!

I hope Megan heals up well!