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Speech therapy, low muscle tone, and what now?


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My son has been in speech through our local school system for years and has made huge improvements.  He's 11 years old now and my speech teacher says he's ready to graduate, but I'm having my doubts.  She was actually a new teacher this year.  She's the first teacher to mentioned that low muscle tone is playing a part in his speech issues.  The first one that had him do extensive mouth exercises to get his muscles working well.  The first one to notice his very crooked smile.  She asked me if he was ever in any accident that affected his face, or had any trauma at birth (both no).

She says he's made huge progress, and that there is nothing more that she can do for him.   He is making all his sounds correctly and he just needs the practice to put them into sentences consistently.   She says it's always going to be harder for him because of low muscle tone.  His tongue is just not as quick to reach all the positions. 

I didn't protest, because I'm at the point where I realize more years of therapy at school is probably not going to help a lot.  I can do the same things at home.  But is there something else I should look into?  Is there something more I should be doing at home?

His speech at best sounds like he has an accent.  At worst, isolated words can be hard to understand.  When he is excited or in a hurry it is the worst and can be difficult for others to understand.  Where do I go from here?  Lots of practice?  Something else?  His speech is improving each year, but will it ever get to normal?

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He sounds like he has apraxia of speech. We did PROMPT for my ds' apraxia, so that's what I would suggest looking for. https://www.promptinstitute.com/search/advanced.asp  Can you make private therapy happen? 

The whole situation is pretty outrageous. And yes, that's what they do. They decide they can no longer help him make progress, so they graduate him.

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Has he ever been evaluated by a neurologist? Low tone and "crooked" smile could be red flags for something neurological.

Now there may or may not be any treatment if there is a neurological condition so if you have one of those awful high deductible plans, you may decide it's not worth the consultation fee. The last two visits my daughter had with the neurologist cost $495 and $695 respectively (fortunately our insurance covered all but the $30 co-pay).

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Thanks ladies for the recommendations.  You've given me some things to think about.

The speech teacher actually recommended that I might want to see a neurologist (she said she'd give me a referral if I wanted one), but it would all be an out of pocket expense since our insurance doesn't cover that type of thing.  His smile is better since he's been doing mouth exercises. 

We had our last meeting yesterday and she said she'd contact me in spring and if I want to continue speech it's up to me.  I just wanted to say that in her defense.  I feel like she's helped a lot and she's not just pushing me out the door.

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On 6/19/2019 at 5:40 AM, wonderfilled said:

My son has been in speech through our local school system for years and has made huge improvements.  He's 11 years old now and my speech teacher says he's ready to graduate, but I'm having my doubts.  She was actually a new teacher this year.  She's the first teacher to mentioned that low muscle tone is playing a part in his speech issues.  The first one that had him do extensive mouth exercises to get his muscles working well.  The first one to notice his very crooked smile.  She asked me if he was ever in any accident that affected his face, or had any trauma at birth (both no).

 

She says he's made huge progress, and that there is nothing more that she can do for him.   He is making all his sounds correctly and he just needs the practice to put them into sentences consistently.   She says it's always going to be harder for him because of low muscle tone.  His tongue is just not as quick to reach all the positions. 

 

I didn't protest, because I'm at the point where I realize more years of therapy at school is probably not going to help a lot.  I can do the same things at home.  But is there something else I should look into?  Is there something more I should be doing at home?

 

His speech at best sounds like he has an accent.  At worst, isolated words can be hard to understand.  When he is excited or in a hurry it is the worst and can be difficult for others to understand.  Where do I go from here?  Lots of practice?  Something else?  His speech is improving each year, but will it ever get to normal?

 

My middle dd just graduated last year from speech, but she retains the "accent"/slow to make the sounds. Mainly she graduated because she needed braces and a palate expander which would cause speech problems she didn't have. Most likely, she has Apraxia (therapist said she was pretty sure, but was not qualified to diagnose), but we could never make PROMPT work, so she worked with a private therapist for 11 years. Honestly? From here the accent is just part of her - she's just learned to slow down her speech and smile and say she grew up here, not Britain when asked. I still prompt her for the R and TH sounds (make her repeat the words), but other than that, we've let it go. She doesn't want to do more therapy, so we're not pushing it. 

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3 hours ago, wonderfilled said:

 The speech teacher actually recommended that I might want to see a neurologist (she said she'd give me a referral if I wanted one), but it would all be an out of pocket expense since our insurance doesn't cover that type of thing.  His smile is better since he's been doing mouth exercises.

If there is a medical school or psychiatric nurse practitioner training program (psych NP's are cross-trained on neurological disorders because there is so much overlap in symptoms), their university clinic might be able to do a sliding scale fee. Your child would see student trainee(s) but everything's all supervised by a professor who signs off on the report so while the exams tend to take longer, I've felt pretty confident about going to university clinics.

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I have a similar profile (finally DX’s with dyspraxia in my 20’s), and my speech therapist graduated me at age 11 with a similar statement. At age 13, I asked to go back because I was running into problems with social speech (part of my disability is that under stress I block in words-I know what I want to say, but for whatever neurological reason, my brain will NOT let me say it), so they did a re-eval and I started speech through high school. Truthfully, for me, the most valuable part of it was that it gave me a couple of days a week that I had a block of time that I was in a quiet place with only a few people, and the chance to explain what I was struggling with. 

I still don’t have some sounds reliably, but those years of language work are probably why I am able to function as an adult in a profession that relies on verbal communications. And I am very sure that my speech therapist was a major reason I made it through high school relatively emotionally intact. 

All that is to say-speech is more than articulation. And middle/high school ages is when “hard to understand under stress” can really start to be a social barrier. 

Edited by dmmetler
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6 hours ago, wonderfilled said:

it would all be an out of pocket expense since our insurance doesn't cover that type of thing.

Can you get him onto a state medicaid program or something to get him some coverage?

It doesn't seem reasonable to me that insurance would not be covering this. There could be strokes, seizures, CP, mitochondrial disorders, who knows what is going on. That is normal medical stuff insurance should be covering for. Now the deductible could be awful. They wanted to refer my dd and it was $900 just to walk in the door. But what you're describing is very concerning. And reality is apraxia (which the motor planning component is) almost never occurs in isolation. There's usually a larger condition going on. So not to be getting further evals is to miss whatever is going on. 

Edited by PeterPan
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In addition to something neurological, you might look up information on connective tissue disorders. My son's mild apraxia seems to be caused by his connective tissue problems. He has learned to kind of turn his good speech off and on as he fatigues or needs to speak to someone that's less likely to understand him easily. 

If your child has a particularly high palate or small jaw, that kind of thing can cause speech issues too, from what I understand.

 

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Do you notice any coordination and fine or gross motor issues?  My son has Developmental Coordination Disorder. He initially at 3 started being seen for speech but that was the tip of the iceberg. I find that DCD is very misunderstood (and unknown) in the the US and I am constantly educating people. For speech he was diagnosed with Phonological Speech Disorder, but his real issue is with connected - complex speech. For that reason many have thought is my be Apraxia (CAS) but if so he would be considered mild and never formally diagnosed. I recently learned that they American Speech and Hearing Assoc (ASHA) is reviewing adding a component which would be "Motor Planning Speech Disorder."  This would fall somewhere between phonological speech disorder and CAS and that about sums up my son. 

I'm curious about "language" in general with your son. More than straight articulation, his your child able to express himself with language, proper grammar, sentence structure, etc. There is much more to speech than just articulation. If you haven't already, it might be worthwhile to find out what assessment was done to determine "graduation" and ensure you are in agreement that the evaluation addressed the issues you're seeing. 

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16 hours ago, EmiSD said:

Do you notice any coordination and fine or gross motor issues?  My son has Developmental Coordination Disorder. He initially at 3 started being seen for speech but that was the tip of the iceberg. I find that DCD is very misunderstood (and unknown) in the the US and I am constantly educating people. For speech he was diagnosed with Phonological Speech Disorder, but his real issue is with connected - complex speech. For that reason many have thought is my be Apraxia (CAS) but if so he would be considered mild and never formally diagnosed. I recently learned that they American Speech and Hearing Assoc (ASHA) is reviewing adding a component which would be "Motor Planning Speech Disorder."  This would fall somewhere between phonological speech disorder and CAS and that about sums up my son. 

I'm curious about "language" in general with your son. More than straight articulation, his your child able to express himself with language, proper grammar, sentence structure, etc. There is much more to speech than just articulation. If you haven't already, it might be worthwhile to find out what assessment was done to determine "graduation" and ensure you are in agreement that the evaluation addressed the issues you're seeing. 

 

This actually sounds a lot like my son.  He was slow to walk (20 months).  I'm not sure he can ties shoes, because I gave up on shoes with ties a long time ago.  It might be time to introduce them again.  His grammar is right on, but it took him a long time to get pronouns right.  He was very slow with handwriting.  I actually wrote for him the first few years for his school work.  He even had trouble with his numbers although he loved math.   So I wrote his numbers, too, so he wouldn't grow to dislike math.  He fell in love with math, though, and started writing page after page of math equations so that helped his overall handwriting.   

He's a bit awkward in sports.

Writing in school is like pulling teeth.  Not the physical act of writing anymore, but coming up with something to write seems like it's really hard.  We've done oral and written narrations for years, and he's really struggled with this, although I see improvement.  Even the simple act of coming up with sentences including a given word during the speech sessions is difficult for him.  His four-year old sister is better at it than him.  This one confuses me because I know he can do it.  The speech therapist mentioned it, but concluded that it didn't point to a disorder.  She also mentioned his slow way of using a scissors, and asked if he ever had physical therapy, but then again decided he was just being extra careful.

He can talk your ear off about math, or anything else that he's really interested in. 

I know any given task I give him, no matter how simple, will be preceded by a couple questions and take much longer than it would take his brothers.

Academically, he scored a composite score in the 99th percentile on his CAT this year.

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I assume he has had testing for disabilities through the school system, since he has been receiving speech services through the school. I'm not clear whether he is homeschooled or not (Okay, I see in your signature that he is using HOD, so it's homeschooling). Does he have an IEP? Has the school found him to have any learning disabilities?

The things that you describe suggest that there may be quite a bit going on other than being slow and careful. These things sound like delays related to disability.

It does not sound like the school is giving you adequate answers. I would recommend private evaluations through a neuropsychologist.

The writing issues sound like dysgraphia, called Specific Learning Disability in Written Expression by schools. The physical issues suggest dyspraxia to me, as well, although there could be other root issues.

I would not accept the "he doesn't need help any more" message the school is giving you. Schools are not good at diagnosing, and they are not required to -- they are only required to provide services and accommodations to help students get an appropriate education.

I really think you need some evaluations to figure out what is going on. Then you can come up with more effective interventions.

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On 6/22/2019 at 8:53 PM, Storygirl said:

I assume he has had testing for disabilities through the school system, since he has been receiving speech services through the school. I'm not clear whether he is homeschooled or not (Okay, I see in your signature that he is using HOD, so it's homeschooling). Does he have an IEP? Has the school found him to have any learning disabilities?

The things that you describe suggest that there may be quite a bit going on other than being slow and careful. These things sound like delays related to disability.

It does not sound like the school is giving you adequate answers. I would recommend private evaluations through a neuropsychologist.

The writing issues sound like dysgraphia, called Specific Learning Disability in Written Expression by schools. The physical issues suggest dyspraxia to me, as well, although there could be other root issues.

I would not accept the "he doesn't need help any more" message the school is giving you. Schools are not good at diagnosing, and they are not required to -- they are only required to provide services and accommodations to help students get an appropriate education.

I really think you need some evaluations to figure out what is going on. Then you can come up with more effective interventions.

 

He was tested when he first started receiving speech services and the tests showed that speech was all he needed.  That was years ago, however, and I guess the other issues didn't show up.  I never thought of testing again.   An official diagnosis didn't seem necessary.  I can see why you would want to in a public school setting, but since I was the one teaching him, he was already getting individualized instruction.

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4 hours ago, wonderfilled said:

He was tested when he first started receiving speech services and the tests showed that speech was all he needed. 

The ps testing is only to determine eligibility for services or whether the disability is so severe that they are forced to admit it affects the dc's ability to access his education. The ps will fail to run necessary tests that would have shown the dc's deficits. They will also use arbitrary cutoff lines (like 1.5-2 standard deviations) for a test rather than using the publisher's cut scores (which could be radically higher). 

So the reason to get private testing is to get objective, 3rd party diagnoses rather than the skewed, self-protecting, budget-protecting evaluations of the ps. It's not that one is more official than another. I used ps evals for my dd's paper trail going into college to save some money and there's nothing unofficial about it. But were the evals complete and objective? Nope. I've had to run more since, sigh. 

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4 hours ago, wonderfilled said:

An official diagnosis didn't seem necessary.  I can see why you would want to in a public school setting, but since I was the one teaching him, he was already getting individualized instruction.

Without the testing, you don't have the data to drive your intervention. You can guess, but the whole point of testing is to get data to allow you to do targeted intervention. Otherwise, you're guessing and missing things.

For instance, there is testing for narrative language. You can GUESS that a dc has narrative language issues, or you can actually quantify them and realize yes, not only does he sorta have an issue but he's so discrepant from his peers that I need to use therapy level materials and do some serious intervention here, explicit instruction.

There's testing for expressive language, and without that you just have a vague sense that the dc might have a few errors. SLPs cannot just quantify those errors accurately through random observation. You need a standardized tool to elicit the structures, one after another, and let the therapist see where the breakdowns occur. 

So good testing drives good intervention, and failing to do the testing allows them to say the intervention isn't necessary. 

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On June 19, 2019 at 6:40 AM, wonderfilled said:

His speech at best sounds like he has an accent.  At worst, isolated words can be hard to understand. 

So they COULD run a test like the VMPAC and actually quantify the motor planning difficulties. But have they? Nope. They just don't run the test and then they're like see, no therapy needed, no problem here, that's just how he sounds, it's not treatable, on and on.

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On 6/24/2019 at 6:00 AM, wonderfilled said:

He was tested when he first started receiving speech services and the tests showed that speech was all he needed. 

He should have a triennial IEP meeting every three years - has that come and gone already? You can call an IEP meeting at any time, and request evaluation for academic services, too. If he's still that hard to understand, it doesn't sound like he should be dismissed from speech, and if writing's a real bear, sounds like an eval is warranted there, too. 

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Mainer has a good point! The school is supposed to re-evaluate every three years. If they have not done so, they are not in compliance with the law. Assuming, that is, that he has an IEP and is not just receiving services without one (which I suppose could happen, though it's not the way schools usually do things).

About getting additional evaluations -- It seems clear that you are not getting enough answers from the school. He may no longer qualify for their help; schools will only intervene on things that they have to, which is why they retest every three years to update the plan. But just because someone no longer qualifies to get help from the school does not mean that they don't need intervention any more. An example from my own experience is that DD13 has an IEP for dyslexia and attended a dyslexia school. She no longer gets direction instruction on spelling in her IEP, but her spelling is still poor, so we are doing private tutoring this summer.

I've had three of my four kids tested privately; two of them also have IEPs through the school, and one has a 504. You can definitely get a lot more information and better answers from a private educational psychologist or neuropsychologist than from the school. The school can tell you if he is performing at peer level or below (or above!), but they often/usually do not tell you WHY. And they run fewer tests than a private psychologist, so things get missed. Having better answers leads to better intervention.

And we have found it only positive to be able to name the disability. So, DD13 doesn't just think about herself that she is poor at reading and spelling; she knows she has dyslexia. Not only does knowledge help us help her, as parents, but it empowers her to advocate for herself. That makes a huge difference, compared to having her just think she is bad at things.

In your son's case, I really think it sounds like there are some things going on that the school has not identified, and that it would be helpful for you to know.

If he does need new testing by the school, because it has been more than three years, you will need to advocate for him and make a comprehensive list of all of the areas where he struggles. They only need to test the things that are brought up to them, so bring up everything and ask how they test for those things.

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For example, for low muscle tone, he needs evaluations by an occupational therapist.

It's really crazy for the school SLP to tell you that he has issues that need OT but for the school to not have an OT evaluate him. It's not even as if you are bringing in an opinion from someone outside the school system and trying to get them to pay attention to it. This is an actual member of the school staff telling you that he has significant issues that should be addressed by an OT. So significant that they will always impact him and that they are impeding the progress the SLP can make with him.

The school cannot say that they suspect a disability but have no intention of evaluating for it. If a disability is suspected, they must evaluate for it under the law. So instead of dismissing him from school services, they should be having their school OT do testing, at the very least.

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4 hours ago, Mainer said:

He should have a triennial IEP meeting every three years - has that come and gone already? You can call an IEP meeting at any time, and request evaluation for academic services, too. If he's still that hard to understand, it doesn't sound like he should be dismissed from speech, and if writing's a real bear, sounds like an eval is warranted there, too. 

I'm not sure he has an IEP.  He had testing done by the school when he was about 4 at my request.  No further testing was ever suggested, and I didn't really think about it.  So I guess I could ask for another evaluation.

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3 hours ago, Storygirl said:

For example, for low muscle tone, he needs evaluations by an occupational therapist.

It's really crazy for the school SLP to tell you that he has issues that need OT but for the school to not have an OT evaluate him. It's not even as if you are bringing in an opinion from someone outside the school system and trying to get them to pay attention to it. This is an actual member of the school staff telling you that he has significant issues that should be addressed by an OT. So significant that they will always impact him and that they are impeding the progress the SLP can make with him.

The school cannot say that they suspect a disability but have no intention of evaluating for it. If a disability is suspected, they must evaluate for it under the law. So instead of dismissing him from school services, they should be having their school OT do testing, at the very least.

The speech therapist didn't really say that he needed more therapy or that he has issues.  She just kept bringing things up, and then dismissing them.  Like when she noticed he was having difficulty coming up with sentences, she mentioned that there is a condition that prevents people from being able to organize their thoughts (or however she worded it), but then she would say that she doesn't think that that is his problem.  Or when she first watched him cut with a scissors, she asked if he had physical therapy, but then concluded that he's actually doing fine.  Things like that. 

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1 minute ago, wonderfilled said:

The speech therapist didn't really say that he needed more therapy or that he has issues.  She just kept bringing things up, and then dismissing them.  Like when she noticed he was having difficulty coming up with sentences, she mentioned that there is a condition that prevents people from being able to organize their thoughts (or however she worded it), but then she would say that she doesn't think that that is his problem.  Or when she first watched him cut with a scissors, she asked if he had physical therapy, but then concluded that he's actually doing fine.  Things like that. 

She is not the expert person who figures those things out. She should be referring him to OT.

I think you should submit a written request for new evaluations. Within your letter, you can say that the SLP has raised concerns that she has not been able to figure out and that need testing by an OT. Include a comment about writing, because a psychologist should be involved in that, and if you only specify OT in your letter, they may try to say that they only need to do an OT evaluation

He should have a full evaluation by the school psychologist, with updated IQ and achievement testing. Going by results when he was four is insufficient for pinpointing his academic needs. So complete testing, not just by an OT, is definitely warranted.

If he had an IEP, the school would have done it every three years, so at age seven and then age ten. So they are way behind. '

It would be really beneficial for you to read the NOLO book on the IEP process (you can find it on amazon or at your library), so that you know your legal rights and make sure that the school follows them.

If you prefer to have the school do the testing, it is free. But I still think you need outside evaluations, as well, in order to get full answers. It's not crazy to do both. My cousin's wife is an educational psych, and she says that MOST of her clients have had school testing done first and then come to her, needing more answers.

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2 minutes ago, Storygirl said:

She is not the expert person who figures those things out. She should be referring him to OT.

I think you should submit a written request for new evaluations. Within your letter, you can say that the SLP has raised concerns that she has not been able to figure out and that need testing by an OT. Include a comment about writing, because a psychologist should be involved in that, and if you only specify OT in your letter, they may try to say that they only need to do an OT evaluation

He should have a full evaluation by the school psychologist, with updated IQ and achievement testing. Going by results when he was four is insufficient for pinpointing his academic needs. So complete testing, not just by an OT, is definitely warranted.

If he had an IEP, the school would have done it every three years, so at age seven and then age ten. So they are way behind. '

It would be really beneficial for you to read the NOLO book on the IEP process (you can find it on amazon or at your library), so that you know your legal rights and make sure that the school follows them.

If you prefer to have the school do the testing, it is free. But I still think you need outside evaluations, as well, in order to get full answers. It's not crazy to do both. My cousin's wife is an educational psych, and she says that MOST of her clients have had school testing done first and then come to her, needing more answers.

Thanks, I was wondering if I should do something like this, so to have it spelled out is good.  They've really been a great district so I don't think it will be a problem. 

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5 minutes ago, wonderfilled said:

Thanks, I was wondering if I should do something like this, so to have it spelled out is good.  They've really been a great district so I don't think it will be a problem. 

I agree that you should do this.  It will help you a lot to know how he's getting speech if he doesn't have an IEP (seems unlikely, but if he had an IEP you'd know, so... hmmmm). 

Here is some info about requesting evaluations. It would probably be helpful for you to provide samples of his academic work so they can see a discrepancy between, say, his math level and his writing level.  https://ldaamerica.org/advocacy/lda-position-papers/right-to-an-evaluation-of-a-child-for-special-education-services/

 

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I think the reason the SLP kept bringing up ideas and then dismissing them is that she could tell there are problems, but they are not in her area of expertise. I think once you enter the "maybe it's this; maybe it's that; I don't know perhaps it's this other thing" zone, that it's an indication that more testing is needed.

If your school has  been providing services for all of these years without legally having to do it (with an IEP qualification), it sounds like they are willing to work with you. But it's wise to get everything in writing and follow the standard legal protocol. Your request for new evaluations needs to be in writing, and then you can start a binder where you keep all correspondence, documents, and test results together in one place.

I would also ask them for a copy of his service plan or file or whatever they have to document what they have been doing with him.

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In our ps, the SN coordinator sets the tone and the outcome is almost predetermined. So the other professionals, unless they rank higher like a psych or a lawyer, pretty much get shut down. So if the SLP already got the "this kid is not being given an IEP" look, then she would be shut down for saying more, even if she knows clinically more should be done. This happened with multiple therapists on our IEP team, and it's a reason therapists leave the ps. 

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On 6/25/2019 at 4:25 PM, PeterPan said:

In our ps, the SN coordinator sets the tone and the outcome is almost predetermined. So the other professionals, unless they rank higher like a psych or a lawyer, pretty much get shut down. So if the SLP already got the "this kid is not being given an IEP" look, then she would be shut down for saying more, even if she knows clinically more should be done. This happened with multiple therapists on our IEP team, and it's a reason therapists leave the ps. 

While this is true, each of the therapists is an equal member of the IEP team. We had a therapist stay just to help the vote "for" the IEP even though her area of testing didn't show that he was eligible for her services. The school psych had come to the meeting with the IEP signed "no." If he'd also discussed the findings with his IEP team, it would have been pre-determination (illegal).

My other child's initial IEP was approved over the written objections of the same psych.

So, the team part of this is truly important. In our district, apparently the therapists knew how to steer the conversation in the right way to keep the needs forefront and the objections in the background.

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