New and confused about next steps

[mom22kids]

Hi everyone!  This is my first time posting...this may be long.

 

Dec 2015 my daughter (10 yrs old at the time) told us that she felt like she was choking (often) and was finding it difficult to swallow food.  Coincidentally, at about the same time the school began to question if she might have ADHD. 

 

For background: we knew she was quirky growing up - no socks, found thinks too loud, too bright, too crowded.  Had some anxiety.  Struggled with sleep. Was a picky eater.  Clumsy.  A text book case but we had no idea about SPD back then.  She was also VERY bright and good grades came easily.  Until grade three when she began to struggle in math.  As time progressed she got worse in math and in my opinion her writing, reading etc became impacted.  She was once way ahead of her peers and now she was on par with them so the school wasn't concerned. Straight B's.

 

She was diagnosed with ADHD and in researching that, while trying to understand what was causing the eating struggles (we initially thought it was anxiety) I began to realize that she had SPD.  We found an OT who specializes in food therapy and just so happened to be the highest certified Canadian OT in the world (again specializing in food issues).

 

Once we started with her we began to peel back the layers and uncover all that is going on. My dd is one of those kids who hides things well (very confident outgoing) but she began to share what her struggles were:  Can't walk and zip a coat, can't catch a ball etc etc.  But she was barely eating so our focus was 100% on feeding therapy.

 

It was time consuming and exhausting and took months. She had to be taught how to swallow and chew again.

 

Eventually one day I remarked to her OT that she is skipping words (I had begun to suspect she was dyslexic) she remarked that it was a Vestibular System issue.  She said "Watch" and she got my dd to do some finger tracking.  My dd was unable to keep her head still - her head went where her eyes went and she had no sensation of this movement.  We had to videotape her to show her.   So I researched to death and our OT immediately began to introduce Astronaut therapy into our sessions.

 

We saw improvements in focus etc.  It was undeniable.  My dd could now leave the kitchen after breakfast to get dressed for school and actually come down DRESSED with her teeth brushed and her hair done.

 

So feeding and astronaut therapy were now our main focus.  In terms of the ADHD we were sent to one of the highest regarded pediatricians and she said dd has ADHD, DCD, and a math LD.  The OT wasn't necessarily in agreement about the DCD because my dd's fine motor is amazing.  But her gross motor is awful!

 

In May 2015 (so 1 year ago) I took dd to an optometrist(who is certified COVD and does Vision therapy) to have her eyes checked.  She immediately knew my dd had visual processing disorder and recommended Visual eye therapy. She was clear that in order to begin the therapy they had to confirm that my dd had a healthy Vestibular System and if not they would have to build that in first.  She said to picture the VS as a scaffolding and the Visual system needs to stand upon that .  When questioned she said that they would use Astronaut therapy to repair the VS.  Which was what we were currently doing (from the comfort of our home) with our OT for less money.  Out OT felt that Sara was not ready for visual therapy and explained that she needed a healthy VS first (which was exactly what the Optometrist said) so we decided to stay the course and focus on food and Astronaut therapy.

 

In the past year my dd has REALLY struggled in school.  All work needs to be modified heavily.  And she is failing math regardless of accommodations.  As well, as we sorted out her VS,  my dds coordination issues became more obvious to the OT and she now has a diagnosis of Dyspraxia.  Which I have researched to death and believe she has 100%. 

 

I think I felt like we were getting to a point in therapy where I was wanting to see more happening. We are working on Sensory integration and I know slow and steady wins the race but I feel like I haven't been seeing enough of an improvement lately.  So I sit at night and I research and research.  I have learned all about the  Retained reflexes etc.  I see videos of people crawling to integrate the reflexes etc.  But we aren't doing any of that.

 

So lucky me I managed to win an ENTIRE online course from Coordikids (a program based out of Australia) that works on crossing the mid-line and and building brain connections.  These exercises have been VERY difficult for my dd.  It has really shone a light on how bad her dyspraxia is.  I videotape every session and then our OT reviews them between visits.  It was obvious that she was surprised at how difficult it is for my daughter to coordinate movements (a plan of action)  and now we suspect that her struggle to swallow might be an offshoot of this dyspraxia.

 

Ok I am getting to the end bit.  Recently I have come to realize that her visual system is causing her an enormous amount if issues.  She has no depth perception, she has no balance.  She writes letters upside down, she can't read capitals (like HAPPY BDAY! in a card) she stood in a kiddie pool and the movemnet of the water made it hard for her to stand and not fall over.

 

Ok if you made it that far...and I pray you did!!  What should my next steps be??  Should I go straight to Vision therapy (which is what I am leaning to) or do I need to worry about all the retained primitive reflexes?  I truly think she needs to the VT to be successful in school.  But is it a waste if the reflexes are not integrated? 

 

My OT says that my dd is on track (in terms of progress for the Sensory integration) and we have seen improvements:  she sleeps better, is no longer chronically constipated, has better social relationships.  But she still can't wear socks, or tolerate loud sounds etc.

 

I feel like I need someone to point me in the right direction.  In a nutshell she has been diagnosed with SPD, Dyspraxia ADHD (which I'm sure she doesn't "have") a Visual Processing disorder, auditory processing issues, a math LD and when we got her Psych Ed assessment done she had a processing speed of 9th percentile.  Any thoughts?

 

 

[Lecka]

It does not exactly give a next step, but have you looked at autism?

 

Here are reasons I ask: sensory issues, visual processing issues, I think suspected auditory processing issues (?), greater difficult with schoolwork starting in grade 3.

 

These are all things that could (or not) go along with autism.

 

I am glad the OT has been so productive so far, and you have had such a good therapist. It sounds like she has make a lot of great progress!

 

That is my thought, for what it is worth. Good luck :)

[mom22kids]

Yes Autism has been mentioned.  My OT admits that over the past year she has vacillated back and forth over whether or not my dd is Autistic.  She says that in the end she errs towards no.  But in reality she thinks it's probably not a "true" no.  More that she thinks that I would be hard pressed to find a practitioner who would check off enough boxes to support the diagnosis.  I think she knows that she is on the spectrum but she feels that a diagnosis wouldn't benefit her and I would get more kickback than support from the school system etc.

 

And I agree with her 100%  I think she has moments when she presents as autistic (this is evident in her social perspective mostly) but I don't think most would agree that it's there.

[PeterPan]

Is that your dd in your avatar?  I'm just wondering because there was a mermaid girl on tv.  Anyways!

 

How much OT are you getting?  The long and short of it is I think you might need *more* OT to spread out this load.  You're asking one OT, in maybe an hour a week, to do EVERYTHING, and then you're surprised it's not all getting done.  

 

No one OT is trained in EVERYTHING typically.  Doesn't matter how good they are.  I would not ask your OT to decide if she's on the spectrum.  If that's even coming up, go to an autism clinic, get the GARS or another appropriate spectrum tool and be done with it.  Not the opinion of an OT who sees her in one setting for an hour a week and is emotionally attached.  She's NOT seeing her in enough settings.  The psych will want those ASD questionaires done by multiple people in multiple settings.  My ds has behaviors (repetitive, etc.) that you don't necessarily see in a one hour OT session.  You might, but you might not.  Doesn't mean they're not happening.

 

So back to OT.  You need someone trained to check for the retained reflexes and you need to work on them, yes.  She's going to need that done (by the OT or the VT doc) for the VT to be successful.  But yes, it's GLARINGLY obvious that you need VT, so you need to move that up as soon as you can.  

 

Is she doing meds?  Has she done any Interactive Metronome?  IM has a provider locator, so you could get some more names of people to try.  

 

It's really not helpful for one therapist to say she's "god" and that EVERYTHING HAS TO WAIT till her blessed work is done.  That's absurd.  Things have to run concurrently, and some things take a LONG TIME.  My ds gets PROMPT for his apraxia.  It's the best therapy, yes.  But because they don't really specialize in language work but more the motor planning, their answer is usually to wait and see if it will come in.  But we CAN work on it and we NEEDED to work on it!!  So don't believe these people or the arrogance.  Use your head.  Expand your team.

 

Yes, get VT.  Yes, get the reflexes checked and worked on by someone.  And honestly, try a new OT just to bring some diversity in training and approach.  I'm going to be shaking up our OT team this fall for that very reason.  We'll have done a year of neurofeedback, and we can get new blood, new perspectives, try new things.  

 

Is she on meds for the ADHD?  There's some discussion (not facts, discussion) that the way the meds increase the dopamine can also help motor planning.  I don't know.  I'm just saying if you were *on the fence* that might be a reason to push over and say hey let's try this...

Edited May 31, 2016 by OhElizabeth

[Storygirl]

Has she had evaluations by the school district or a private neuropsychologist? If she has had the WISC, were her verbal scores (VCI) significantly higher than her perceptual reasoning skills (PRI)? If yes, she may have Nonverbal Learning Disorder (NVLD or sometimes abbreviated NLD). Dyspraxia and math disabilities are commonly found in people with NVLD. Although it is not in the current DSM, it is a diagnosis that comes with a certain profile of related disabilities that can seem to be on the borderline of the autism spectrum. Academically, students with NVLD tend to do well in the first few years of school before their learning disabilities rear their heads. Problems with reading comprehension are also common.

 

Has anyone run a CTOPP on her to see if she has a phonological disability (which would point toward dyslexia?). Could her reading troubles be due to vision plus possible comprehension problems instead of a phonological problem?

 

Has she been checked by a neurologist? Her symptoms seem extreme, even for someone with SPD and DCD. I don't know anything about it, but could it be something like a mild case of cerebral palsy? It might be something to rule out.

 

:grouphug:

[mom22kids]

Is that your dd in your avatar?  I'm just wondering because there was a mermaid girl on tv.  Anyways!

 

How much OT are you getting?  The long and short of it is I think you might need *more* OT to spread out this load.  You're asking one OT, in maybe an hour a week, to do EVERYTHING, and then you're surprised it's not all getting done.  

 

No one OT is trained in EVERYTHING typically.  Doesn't matter how good they are.  I would not ask your OT to decide if she's on the spectrum.  If that's even coming up, go to an autism clinic, get the GARS or another appropriate spectrum tool and be done with it.  Not the opinion of an OT who sees her in one setting for an hour a week and is emotionally attached.  She's NOT seeing her in enough settings.  The psych will want those ASD questionaires done by multiple people in multiple settings.  My ds has behaviors (repetitive, etc.) that you don't necessarily see in a one hour OT session.  You might, but you might not.  Doesn't mean they're not happening.

 

So back to OT.  You need someone trained to check for the retained reflexes and you need to work on them, yes.  She's going to need that done (by the OT or the VT doc) for the VT to be successful.  But yes, it's GLARINGLY obvious that you need VT, so you need to move that up as soon as you can.  

 

Is she doing meds?  Has she done any Interactive Metronome?  IM has a provider locator, so you could get some more names of people to try.  

 

It's really not helpful for one therapist to say she's "god" and that EVERYTHING HAS TO WAIT till her blessed work is done.  That's absurd.  Things have to run concurrently, and some things take a LONG TIME.  My ds gets PROMPT for his apraxia.  It's the best therapy, yes.  But because they don't really specialize in language work but more the motor planning, their answer is usually to wait and see if it will come in.  But we CAN work on it and we NEEDED to work on it!!  So don't believe these people or the arrogance.  Use your head.  Expand your team.

 

Yes, get VT.  Yes, get the reflexes checked and worked on by someone.  And honestly, try a new OT just to bring some diversity in training and approach.  I'm going to be shaking up our OT team this fall for that very reason.  We'll have done a year of neurofeedback, and we can get new blood, new perspectives, try new things.  

 

Is she on meds for the ADHD?  There's some discussion (not facts, discussion) that the way the meds increase the dopamine can also help motor planning.  I don't know.  I'm just saying if you were *on the fence* that might be a reason to push over and say hey let's try this...

 

Well we currently get as much OT as we can afford.  When she was struggling with eating she was getting 8-12 hours a month and we are now down to 4-8 depending week to week if we feel we next extra time at the each session.  In a perfect world I would have unlimited access but in reality I do what I can.

 

To clarify I didn't ask the OT to diagnose her with Autism.  I good friend who is knowledgeable in the area suggested it and it made sense. I then discussed the possibility with a few people...her principle, her guidance counselor, family and of course the OT.  No one other than the OT and the original friend felt she met the criteria.  

 

And while it might seem GLARINGLY obvious that she needs VT I was really mostly curious if she is READY for it?  It was glaringly obvious this time last year that she needed it but both the OT and the Vision Therapist agreed that her VS was too immature at that time to support the therapy.  So now I am curious about these primitive reflexes. 

 

Also to clarify the OT does not have a GOD complex nor do I personally regard her as one.  But factually speaking she is the highest certified Canadian OT in the world and was able to help us when a great number of OT's said they were not sure how to help her.  So yes I regard her as highly qualified.  She was the first person to say "I can help this girl" and then in fact did.  I waited on the VT not because she made me wait but again...because both she and the VT place said she needed a healthy VS in order to start.

 

I have not met with an of the god complex or arrogance that you have mentioned and in fact -  I have been using my head.

 

While this has been an issue that our family has been dealing with for just over a year it is only in the last month that I was made aware of the severity of the dyspraxia and just over this past weekend that her visual struggles became so apparent. 

 

Her feeding issues (and Vestibular system) have been our focus and as they become sorted we are now able to start to tackle some of these other issues.  She also does therapeutic listening and zones of regulation.  Meds were not her friend.

[mom22kids]

Has she had evaluations by the school district or a private neuropsychologist? If she has had the WISC, were her verbal scores (VCI) significantly higher than her perceptual reasoning skills (PRI)? If yes, she may have Nonverbal Learning Disorder (NVLD or sometimes abbreviated NLD). Dyspraxia and math disabilities are commonly found in people with NVLD. Although it is not in the current DSM, it is a diagnosis that comes with a certain profile of related disabilities that can seem to be on the borderline of the autism spectrum. Academically, students with NVLD tend to do well in the first few years of school before their learning disabilities rear their heads. Problems with reading comprehension are also common.

 

Has anyone run a CTOPP on her to see if she has a phonological disability (which would point toward dyslexia?). Could her reading troubles be due to vision plus possible comprehension problems instead of a phonological problem?

 

Has she been checked by a neurologist? Her symptoms seem extreme, even for someone with SPD and DCD. I don't know anything about it, but could it be something like a mild case of cerebral palsy? It might be something to rule out.

 

:grouphug:

 

I beleive she had the WISC administered but would need to dig everything out and review before I answer that correctly.  What you are describing sounds a lot like her so it's very possible that you are on to something?  Will look deeper into that.  Thanks!

 

No idea what CTOPP is?  Her file is being reviewed for a CAPD testing - if she gets approved perhaps it will be covered then?

 

She has not been checked by a neurologist.  That never even occurred to me as a possibility or that I had that option?  Thus far everything we have uncovered about her made sense and ticked all the boxes, as they say, so it never occurred to me to look for another possibility.  Her OT did say that she rates her as mild to moderate dyspraxia (leaning more to moderate) and the severe dyspraxia presents like Cerebral Palsy so that might be why her description brings that to your mind.

 

[itsheresomewhere]

If I were you- I would possibly increase OT and schedule an appointment for a neurological evaluation.  It sounds to me like there are enough puzzle pieces coming out that it could lead you to a diagnosis that might fit better.  It could also show you want therapies might work better.  In my friend's case, her DS's new diagnosis got them in a program with more therapy.  I would put VT aside while I got a neurological evaluation. This is just what I would do.

 

 

[mom22kids]

If I were you- I would possibly increase OT and schedule an appointment for a neurological evaluation.  It sounds to me like there are enough puzzle pieces coming out that it could lead you to a diagnosis that might fit better.  It could also show you want therapies might work better.  In my friend's case, her DS's new diagnosis got them in a program with more therapy.  I would put VT aside while I got a neurological evaluation. This is just what I would do.

 

Thanks!  What does a neurological evaluation entail?  What are they looking for in other words?

 

[PeterPan]

I think what you might want to do is scope around for VT docs.  Some of them do largely paper-based therapy.  Some do some hands-on and lots of paper.  An occasional, unusual developmental optometrist will be very, very hands-on.  I've heard stories of people getting VT where they were crawling on the floor while doing their exercises, etc.  Like lots of whole body and midline WHILE working on the eyes.  I think that a therapy like this, where the eye doc is doing bodywork *while* they do the eyes, could work for her.  Exclusively paper driven therapy (traditional) is not going to.

 

There is discussion that a fair percentage of symptoms of dyspraxia can improve by improving strength.  With strength and use comes proprioception.  I think you could consider PT, if you can get coverage for it, to work on *strength* to improve the DCD symptoms.  This would be for her overall body.  Alternatives would be a personal trainer, a program you make at home, or exercises like in the book Beating Dyspraxia with a Hop, a Skip, and a Jump.

 

For the feeding, you might see if there is a PROMPT therapist near you who specializes in feeding.  PROMPT is for apraxia (praxis) of speech.  So dyspraxia is her overall body.  You can have oral apraxia and verbal apraxia.  It's not that PROMPT is necessarily going to solve a feeding problem, but it's at least a speech therapist who specializes in praxis.  Our first PROMPT therapist specialized in apraxia and feeding disorders.  If you can find someone like that, they might be able to help.  PROMPT actually has hands-on ways of telling the brain the motor planning for the mouth.  There are also things they can do for oral tone.

 

I'm sorry finances are tight when you have such a challenging situation.  It sounds like you've done some really good things.  Will the care system you have access to give you more coverage?  Why are you having to pay for this?  I'm just showing my lack of understanding of the Canadian system.  Are you relegated to paying privately when they don't provide it publicly?

 

Have any of your providers checked her for retained primitive reflexes?  If they have not, you could google and get videos to check them yourself.  Although it's true there is an order things develop it, it's also true we have to work on stuff, kwim?  Like sometimes we can work on the reflexes AND work on vision.  We can work on midline AND work on vision.  If you get someone who's doing a lot of bodywork, they can blend these things.  BalavisX is not too expensive and it's easy enough for you to implement at home with readily accessible things (balls, beanbags).  It's not going to be a super, super potent thing, but it actually is useful and it's under $30.  It's going to work on midline, tracking, even some attention and focus.  

 

Just as an unsolicited comment, I think you're reaching the point where things are going to transition from asking how do I fix/cure/make this go away (which has probably already left your mind), to what things are MOST IMPORTANT.  I think the feeding is important, and that's probably, as you say, praxis.  So look for a PROMPT therapist specializing in feeding, hopefully someone certified or an instructor (like travel to get this eval) and see what they say.  Then for the DCD, maybe pick a few things and go ok, if we got these two areas improved, these would improve her quality of life.  So you could have an overall strength-building plan (with a PT, with a trainer, using bands and videos at home, whatever) and then maybe one or two things that you're like ok if she had THESE she'd have what she wants.  Might be swimming or being able to walk with some endurance (say 20-30 min) for pleasure or whatever.  Horseback riding is astonishing for building core strength.  That's a lifelong pleasure.  

 

Just to jump start you, RMT is a good methodology for working on retained reflexes.  Maybe by googling you'll find someone near you who does it.  At least you'll know what you're asking for when you call around.  You can also google and find snippets about it here and there.

Edited June 1, 2016 by OhElizabeth

[mom22kids]

Yeah last year was an interesting year for us...all her issues came to light at the same time that they found a lump in my breast.  I spent 12 months having MRI's biopsies and being that my pathologist saw indicators for a rare cancer with a 1-2 year survival rate while all this was happening. 

 

So it's been hard to catch a breath and make a plan.  My health issues are resolved (mostly) and I am just getting my head wrapped around what is going on with her.  Up until recently I was just "left foot - right foot" some days.

 

And no we have no coverage.  We did just apply for the Disability tax credit and we are hoping we come into some money from that.

 

So I have a lot to digest.  In researching CP I see that there may be something there worth investigating. 

 

I think you are right that I am past the how do I cure this and am now just trying to minimize the most problematic issues.  The OT wants a modified barium swallow test done.  So I guess that and a Neurological workup/CP screening is in order?

 

The VT place that we are considering is more like the one you described with crawling and prisim therapy, trampolines etc. But I will know more after that appointment at the end of June.

 

Breathe in....breathe out...

 

Thanks everyone!

[PeterPan]

That's a lot to deal with all at once!

 

What is the OT seeing to say that?  You want to work up from less expensive options to more expensive.  So an eval by an SLP specializing in apraxia and feeding disorders might be $200.  Is there question of a tumor or obstruction or something?  Some reason to think it's something beyond praxis (motor planning) causing the feeding issue?  

 

Edited June 1, 2016 by OhElizabeth

[Storygirl]

I'm so glad that your health is better!

 

I really don't know anything about CP or other neurological disorders, except that my parents have seen neurologists for various issues. Neurologists can have various specialities, including neuromuscular.

 

Here's why I suggested a neurologist:

 

On paper, my son has many of the same diagnoses as your daughter. SPD, ADHD, DCD, vestibular and proprioception issues, visual spatial deficits, extremely low processing (1st percentile),  LD in math and reading comprehension. He has NVLD. He was checked by a vision therapist, who didn't find any developmental vision issues. His motor issues manifest more in fine motor difficulties, and he is quite athletic (competitive gymnast), but we see the gross motor imbalances too. Just this week he took a swimming test at the pool, where he had to swim the length of the pool in a lane. DH says that DS easily swam an extra 50% distance, because he wobbled from one side of the lane the other all the way down, instead of swimming straight.

 

That's just to show you why your post caught my attention. Obviously, every child is different, and we wouldn't expect two kids with even the exact same diagnosis to function exactly the same. But your daughter's motor issues, as you describe them, sound significant enough that it made me wonder if there could a different underlying cause at the root of all of it.

 

I think that continuing with therapies is necessary, and Elizabeth gave you a good list of ideas there. But if there is a root cause that is not being addressed, you could spend a lot of money on therapies that are not targeting the best things or that will not be effective.

 

Hopefully a neurologist would rule out any other global issues and not find anything. But I think I would want to know for sure.

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/dyspraxia/understanding-dyspraxia#item5

 

 

ETA: We wonder if DS12 has an underlying condition as well, but in his case, what we wonder about is autism, because he has social pragmatic issues and other characteristics that might point toward ASD. I agree with Elizabeth, by the way, that if you suspect autism at all (and sometimes it is hard to tell with borderline kids, especially for girls, and even experts can form different opinions), that you will only know for sure if you have a full autism screening. We've been told by various people that they wouldn't see autism in DS, either, but unless and until we have him screened at an autism clinic that provides a very thorough evaluation, we are still uncertain. Even the criteria for diagnosing autism can change (and did, between the DSM4 and DSM5 publications of diagnostic symptoms), so really only a very specialized expert can puzzle out the borderline cases. Other people can offer opinions, but they are just opinions.

Edited June 1, 2016 by Storygirl

[MerryAtHope]

Ok if you made it that far...and I pray you did!!  What should my next steps be??  Should I go straight to Vision therapy (which is what I am leaning to) or do I need to worry about all the retained primitive reflexes?  I truly think she needs to the VT to be successful in school.  But is it a waste if the reflexes are not integrated? 

 

The vision therapy will not stick if you don't address primitive reflexes. If your OT isn't doing those at home, find out specifically what kinds of exercises the VT considers necessary. Don't let them just label but actually give you a list. Maybe they are different. 

 

There are different exercises to do, depending on the retained reflex--I would ask your OT specifically about crawling & why your son isn't doing it. Perhaps he's not struggling with that particular reflex but has others that are retained. Find out which ones he struggles with and which ones have been worked on. See if you can coordinate the work of the OT and the VT to move forward--or find out what it will take to get your dd to the point of being ready to do VT. This site has a description of various primitive reflexes and some of the exercises to work on them. We did many of these exercises when my son was in VT.

 

Hang in there!

[Heathermomster]

http://www.retainedneonatalreflexes.com.au/test-at-hom/

 

 

..and VT is a waste if retained reflexes are not integrated.  

 

Edited June 1, 2016 by Heathermomster

[mom22kids]

That's a lot to deal with all at once!

 

What is the OT seeing to say that?  You want to work up from less expensive options to more expensive.  So an eval by an SLP specializing in apraxia and feeding disorders might be $200.  Is there question of a tumor or obstruction or something?  Some reason to think it's something beyond praxis (motor planning) causing the feeding issue?  

 

I think her reason for the barium swallow test is 2 fold.  I think she wants to rule out a physical "impairment" that could be causing problems with swallowing (though her gut says it will come back negative) and second is he wants to watch the stages of her swallowing.  Her swallow technique on the inside.... and something about observing something occuring externally.  But my mind is drawing a blank.

 

When she first came into our lives my daughter had global mouth weakness..her bite, chew, lips, cheeks, swallow, etc.  We repaired everything but the struggle to swallow is sticking around.  I think she wants to isolate the problem.

[mom22kids]

I'm so glad that your health is better!

 

I really don't know anything about CP or other neurological disorders, except that my parents have seen neurologists for various issues. Neurologists can have various specialities, including neuromuscular.

 

Here's why I suggested a neurologist:

 

On paper, my son has many of the same diagnoses as your daughter. SPD, ADHD, DCD, vestibular and proprioception issues, visual spatial deficits, extremely low processing (1st percentile),  LD in math and reading comprehension. He has NVLD. He was checked by a vision therapist, who didn't find any developmental vision issues. His motor issues manifest more in fine motor difficulties, and he is quite athletic (competitive gymnast), but we see the gross motor imbalances too. Just this week he took a swimming test at the pool, where he had to swim the length of the pool in a lane. DH says that DS easily swam an extra 50% distance, because he wobbled from one side of the lane the other all the way down, instead of swimming straight.

 

That's just to show you why your post caught my attention. Obviously, every child is different, and we wouldn't expect two kids with even the exact same diagnosis to function exactly the same. But your daughter's motor issues, as you describe them, sound significant enough that it made me wonder if there could a different underlying cause at the root of all of it.

 

I think that continuing with therapies is necessary, and Elizabeth gave you a good list of ideas there. But if there is a root cause that is not being addressed, you could spend a lot of money on therapies that are not targeting the best things or that will not be effective.

 

Hopefully a neurologist would rule out any other global issues and not find anything. But I think I would want to know for sure.

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/dyspraxia/understanding-dyspraxia#item5

 

 

ETA: We wonder if DS12 has an underlying condition as well, but in his case, what we wonder about is autism, because he has social pragmatic issues and other characteristics that might point toward ASD. I agree with Elizabeth, by the way, that if you suspect autism at all (and sometimes it is hard to tell with borderline kids, especially for girls, and even experts can form different opinions), that you will only know for sure if you have a full autism screening. We've been told by various people that they wouldn't see autism in DS, either, but unless and until we have him screened at an autism clinic that provides a very thorough evaluation, we are still uncertain. Even the criteria for diagnosing autism can change (and did, between the DSM4 and DSM5 publications of diagnostic symptoms), so really only a very specialized expert can puzzle out the borderline cases. Other people can offer opinions, but they are just opinions.

 

My daughter does sound similar to yours in many ways.  She unlike your son has amazing fine motor - but we are artsy fartsy and I had these kids cutting, drawing and glueing as babies so my OT thinks I worked a lot of that out in the amount of fine motor I did with her.  Her gross motor is awful.  And I agree that they are significant enough that they warrant a second look at.

 

In terms of the Autism screening.  It's just out of budget for something that has a minimal impact on her.  I already paid out of pocket for the Psych Ed because my daughter didn't qualify for getting it done through the school.  She was a B student and by the time I fought to get her recognized as struggling (and they agreed to get the Psych ed done through schoo) she was put on a wait list of about 18 months.  So we just went ahead and did it ourselves.

 

I know this sounds absurd for how I have described her struggles...but this child presents like she is fine.  She has learned to compensate and presents quite typical.  I have friends who FINALLY believe me that she has issues but its been a battle to get people to see past how she presents. 

 

Her teacher used to tell me that she was "playing" me. Now here we are at the end of the year and thank god his eyes have been opened to her issues.  But she has managed to hide her disabilities so well that she is shocked when she reveals that she can't "xyz" and I had no idea. 

 

[PeterPan]

I think her reason for the barium swallow test is 2 fold.  I think she wants to rule out a physical "impairment" that could be causing problems with swallowing (though her gut says it will come back negative) and second is he wants to watch the stages of her swallowing.  Her swallow technique on the inside.... and something about observing something occuring externally.  But my mind is drawing a blank.

 

When she first came into our lives my daughter had global mouth weakness..her bite, chew, lips, cheeks, swallow, etc.  We repaired everything but the struggle to swallow is sticking around.  I think she wants to isolate the problem.

 

It would be cheaper to get a 2nd opinion on the feeding.

[mom22kids]

The vision therapy will not stick if you don't address primitive reflexes. If your OT isn't doing those at home, find out specifically what kinds of exercises the VT considers necessary. Don't let them just label but actually give you a list. Maybe they are different. 

 

There are different exercises to do, depending on the retained reflex--I would ask your OT specifically about crawling & why your son isn't doing it. Perhaps he's not struggling with that particular reflex but has others that are retained. Find out which ones he struggles with and which ones have been worked on. See if you can coordinate the work of the OT and the VT to move forward--or find out what it will take to get your dd to the point of being ready to do VT. This site has a description of various primitive reflexes and some of the exercises to work on them. We did many of these exercises when my son was in VT.

 

Hang in there!

 

Our OT has mentioned the retained primitive reflexes.  She is aware that they are causing problems for her and my understanding of how she explained it is that RPR are the root of ALL OT.  That everything OT's work on are the result of these reflexes causing problems.  So she knows there are there - though we have not discussed which specific reflexes are causing problems for my daughter.  I think she has spent the past year trying not to overwhelm me! LOL

[mom22kids]

It would be cheaper to get a 2nd opinion on the feeding.

 

How?  By another OT?  Because here in Canada the swallow test would be covered by our federal health plan but a second opinion from an OT would be out of pocket.  And because she is the highest certified OT for feeding issues so I would be getting a second opinion from some one less qualified. 

 

I have to tell you...with regards to food issues...watching her work is mind blowing. 

 

Edited June 1, 2016 by mermaid'smom

[PeterPan]

Ah, I thought you were going to have to pay oop for the swallow test.  Well sure if it's free, lol.  

 

[mom22kids]

Ah, I thought you were going to have to pay oop for the swallow test.  Well sure if it's free, lol.  

 

Gotcha!  Nope it's odd what is free here and what I have to pay for.  For example the CAPD test will cost me $150 but this will be free.  The Neurological work up will be free also I assume.

[Storygirl]

I don't think anyone answered this, but CTOPP is Comprehensive Test of Phonological Processing. That would be to find out if there is actually a decoding or phonological problem underlying the reading struggles.

[PeterPan]

Has she had an eval by an SLP?  Is SLP covered?  An SLP can run the CTOPP, but an SLP can also run an APD screening, detailed language testing like the CELF or CASL, etc.  I've lost track of everything you're exploring.  I'm just saying reading is a pretty complex thing and lots of things affect it.  The vision problems would certainly complicate it.  Dyslexia of course would.  Language issues would.  (inferences, vocabulary, sequencing, etc.)  

 

Just trying to think of more ways you could get more info for free.  :)  You could check your psych report to see what was already run.  

 

It would be good if you could get sorted out what is going on with the ADHD.  What happened when she tried the meds?  Some kids find their APD symptoms improve with meds.  Also meds bump dopamine levels, which are known to improve motor planning.  I've seen posts on the board with people saying their dc with apraxia got and lost speech with the ADHD meds, making it a pretty significant effect!  I'm just saying it would be a rabbit trail to sort out to see if there's some improvement there to be had, maybe with a different med, whatever.  Some peds will run the Quotient test to quantify the ADHD.  It's pretty interesting, with multiple sensors, etc.  

Edited June 1, 2016 by OhElizabeth

[mom22kids]

Has she had an eval by an SLP?  Is SLP covered?  An SLP can run the CTOPP, but an SLP can also run an APD screening, detailed language testing like the CELF or CASL, etc.  I've lost track of everything you're exploring.  I'm just saying reading is a pretty complex thing and lots of things affect it.  The vision problems would certainly complicate it.  Dyslexia of course would.  Language issues would.  (inferences, vocabulary, sequencing, etc.)  

 

Just trying to think of more ways you could get more info for free.   :)  You could check your psych report to see what was already run.  

 

It would be good if you could get sorted out what is going on with the ADHD.  What happened when she tried the meds?  Some kids find their APD symptoms improve with meds.  Also meds bump dopamine levels, which are known to improve motor planning.  I've seen posts on the board with people saying their dc with apraxia got and lost speech with the ADHD meds, making it a pretty significant effect!  I'm just saying it would be a rabbit trail to sort out to see if there's some improvement there to be had, maybe with a different med, whatever.  Some peds will run the Quotient test to quantify the ADHD.  It's pretty interesting, with multiple sensors, etc.  

 

In our case any avenues for a FREE eval done by a SLP are not available to us because she has no lisps or any speech "issues".  However when we first met our OT she said a few weeks into our therapy that she was happy to see that dds S's were no longer "Slushy".  I was confused as her S's never appeared slushy to me nor had anyone else noted them.

 

To most people her speech patterns are normal (even my husband thinks they are) but I have come to see that she does not have typical speech. She has a lot of "Uhms" while she tries to recall words (a weakness in her Psych Ed Assess) some choppiness.  Some moments where her speech is controlled and slowed interspersed with some rapid speaking and what appears to me to be cutting words short of saying them fully.

 

Our OT sees them as well and says they are part of the dyspraxia.  But not one person who would provide us with a free eval would agree that they was a problem in her speech.  Its too subtle to qualify.  But taking into account the host of other issues it is a red flag to me.

 

In her Psych Ed she scored very well in most areas relating to language.  But this is deceiving because language is her "thing".  She is addicted to words.  She reads a TONNE and writes poems and song lyrics so in my opinion that being her area of interest has masked a struggle.

 

Personally I don't think she has ADHD.  It was the first label that was slapped on her - and trust me I am aware she is unfocused - but it is really just a symptom of her bigger issues.  But we barked up that tree for a while early on. 

 

We tried meds and stopped for 4 reasons: 1) My husband desperately was against them (dd did not know that) 2) Dd was adamant against them (but she was willing to try them) because she saw her best friend turn into a zombie when she was on them.  3) With her eating struggles it wasn't favorable to give her meds that supressed her appetite and interfered with the very NEEDED therapy that was happening.  4) They made my 100% happy kid sob for an hour everyday at 6pm like clockwork.  She became an emotional mess.

[PeterPan]

I'm just repeating myself, but apraxia of speech (verbal or oral) would show up like you're describing.  Since she has overall dyspraxia, there's no reason to assume it's NOT praxis causing her speech problems.  Since praxis of speech is TREATABLE with PROMPT, a PROMPT therapist is what you're looking for.  The PROMPT Institute website has a provider locator map feature. 

 

Kids with DCD, CP, ASD, Downs, etc. are the norm in PROMPT therapy, so your dd will not be abnormal or unusually hard.  It sounds like you have more than enough reason to want that eval.  Also the SLP could run an APD screening and language testing.  Somebody mentioned reading.  The language issues that an SLP can test CAN affect reading.  So I would say get that referral to the SLP who does PROMPT and let them sort it out.

 

Yes, I've seen kids turned into zombies on the meds.  I think it's the dose and that it's more convenient for the parents and teachers.  It also sounds like anxiety in your dd.  I can tell you that people who have enough funds to do the doctor visits to try enough brands of meds and doses eventually get it worked out.  When your dd was having that reaction, did your ped offer to switch her to another med?  I agree that's unacceptable, but it doesn't have to be that way.  Were the effects while the meds were *in* her system beneficial?  

[mom22kids]

I'm just repeating myself, but apraxia of speech (verbal or oral) would show up like you're describing.  Since she has overall dyspraxia, there's no reason to assume it's NOT praxis causing her speech problems.  Since praxis of speech is TREATABLE with PROMPT, a PROMPT therapist is what you're looking for.  The PROMPT Institute website has a provider locator map feature. 

 

Kids with DCD, CP, ASD, Downs, etc. are the norm in PROMPT therapy, so your dd will not be abnormal or unusually hard.  It sounds like you have more than enough reason to want that eval.  Also the SLP could run an APD screening and language testing.  Somebody mentioned reading.  The language issues that an SLP can test CAN affect reading.  So I would say get that referral to the SLP who does PROMPT and let them sort it out.

 

Yes, I've seen kids turned into zombies on the meds.  I think it's the dose and that it's more convenient for the parents and teachers.  It also sounds like anxiety in your dd.  I can tell you that people who have enough funds to do the doctor visits to try enough brands of meds and doses eventually get it worked out.  When your dd was having that reaction, did your ped offer to switch her to another med?  I agree that's unacceptable, but it doesn't have to be that way.  Were the effects while the meds were *in* her system beneficial?  

 

I will definitely look into this.  And maybe I just am overwhelmed with info and options but it seems so daunting to get ALL this done right now.  I feel like there is definitely some irregularities in her speech that should/could be addressed but I feel like there are so many other more pressing things to deal with.  Vision and balance being the two biggest at this moment (actually tied with the swallowing).  I'm not sure if she can handle ALL the therapies at once.  

 

Once I get some of this other stuff sorted it wll be worth examining.  Unless you are trying to tell me that the PROMPT therapy is going to do more than fix her speech? Maybe I'm just not grasping the full effect of what this PROMPT will give me?

 

Oh and the meds didn't pan out at the time ( and no we saw no noticeable improvements) and we know PLENTY of kids on them who were not zombies but this stuck with her as being not something she wanted for herself.  I personally am not against meds and they only happened at MY pushing.  Even our family GP tried to talk me out of them.  But really at the time her eating was in crisis and giving her meds that interfered with eating was not smart and the cons out weighed the pros at THAT time. A year later it might be a conversation to have again?

Edited June 2, 2016 by mermaid'smom

[PeterPan]

I think you can prioritize.  If you work on retained reflexes, that will give the foundation for a lot of other stuff.  And then I'm suggesting the speech, because yes I think if you get an AMAZING PROMPT therapist (certified or an instructor) you might find more things.  I can't guarantee that, but I'm just saying you could.  Because if the OT had been able to fix EVERYTHING in her mouth, her speech and feeding should be working.  They're both probably praxis and a PROMPT therapist who also does feeding might be able to sort that out.  Or just a PROMPT therapist.

 

Honestly, people doubt me, then they take their kids to the PROMPT therapist and go WHY did I doubt?  :)  

 

I'm on the PROMPT Institute site, and they're coming to Ottowa in June!  I have no clue if that's near you, lol.  I'm just saying they're coming!!!  You can't go unless you're already an SLP, but yes there are people!!

 

Ok, I'm turning up 5 pages of results on the PROMPT Institute locator search thing.  Go there and check it out.  Member Search Results - The PROMPT Institute

[PeterPan]

Advanced Member Search - The PROMPT Institute

 

Here's the advanced search.  Trained means they did Intro.  I know the equivalent of that.  Move on.  Bridging means they did the next course.  That's better.  That means they weren't in it just for the CEUs but actually give a rip and are trying to learn.  There's a LOT OF TIME between Bridging and Certified.  If you *can* find someone certified or better, it's worth it.  Or drive/fly for a certified/instructor eval and then do your therapy with someone closer.  It's not pretty to have things get missed.  

 

Our first SLP started as certified and became an instructor.  Then she trained some more people, like hand picked trained, and that's who we're using now.  Our chick is getting certified soon.  So you really just look at the person and use your head, kwim?  Also these people will TALK with you.  Call, email, talk with them.  Tell them you have continued feeding problems, "slushy /s/", and a DCD diagnosis.  Find someone who does a LOT of feeding.  You want them to do *pure* PROMPT, not blended with Kauffman, and you want them to be doing all apraxia most of the day.  If they ARE all those things, they'll probably know enough to do whatever that field *can* do to help you.  

 

I just think you'll *probably* get in there and find some things.  You have an overall praxis diagnosis and her speech and feeding are still affected.  Your OT has done a lot, but now how about someone who does oral and verbal praxis ALL DAY LONG, kwim?  That's what our therapists are.  In fact, if you want to fly, I'll tell you where to go. :)

Edited June 2, 2016 by OhElizabeth

[PeterPan]

You have 4 certified or instructor level PROMPT SLPs in Canada.

 

Toronto

Niagara Falls

Spruce Grove

Winsdor

[PeterPan]

So my thinking is prioritize the oral/verbal praxis evals and the reflex work, because the reflex work will END about the time the speech stuff gets really comfy and into a routine.  Then you'll feel like you can deal with other things and not be overwhelmed.  

 

Does she take any omega 3?  Fish or flax, borage, whatever.

[mom22kids]

I am in driving distance to Toronto and Niagara Falls so that is good info to have.  I am not against doing PROMPT (even though I seriously have no idea what it even is! LOL) but I just can't imagine right now putting resources and energy into an issue that is lower on the totem pole.  My new current plan of action is (in no particular order) the swallow test, a neurological workup/screening for CP, and the Vision Therapy.  Once those have a plan I would look further into this PROMPT you speak so highly of.

 

The good news is MOST of today's therapy session was spent discussing VT, CP and these retained reflexes. 

 

As I suspected my OT is completely aware of the Retained reflexes.  She agrees that ALL of them are problematic. She also said that my dd is one of only a few clients she has had that (in her opinion) has reflexes that are integrated but not assimilated .  She says that the reflexes are integrated - meaning that they do not present physically - so in the case of the moro reflex she does not startle with her hands raiding up but the reflex is still active.  In her opinion (which I suspect is going to cause some of you to scratch your heads) my dd should not perform the typical exercises to integrate these reflexes because it will actually activate an action/movement that is dormant. So we are/have been integrating them through play in games that mimic the movements in a subconscious way. 

 

Crawling (in play - obstacle courses etc) will still be used but lying on her back and mimicking some of those "infant stage" movements is not recommended.  Crazy eh?

[Guest]

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Edited June 2, 2016 by Guest

[PeterPan]

I think Kbutton went to a practitioner who said that for reflexes, so that's something some people say, yes.  

 

I think it would be easy enough to *call* those high level PROMPT people who are reasonable distances from you and talk it through.  That wouldn't cost you anything.  I think you have obvious symptoms they would treat.  Speech and feeding are a big deal.  I'm all for VT, but I think it's more important to be able to eat, lol.  Happily in your case you wouldn't have to choose.  It sounds like your OT will start work on reflexes and the system will pay for you to see a neurologist and maybe also SLP.  I think you could do the SLP eval while you wait in line for the barium thing then cancel it if everything gets explained by the PROMPT SLP.

 

You can read about PROMPT for yourself.  Basically it's about the most advanced thing you're going to find for oral and verbal apraxia.  They're going to get in there and elicit things, see what's going on, then they'll touch and tell the brain what to connect.  They actually get to the HEART of the praxis.  If there's praxis behind her speech or feeding issues, the PROMPT therapist is the one to find it.  But I would definitely call around and interview several to see who's doing it a lot, who is also doing a lot of feeding issues.

 

Let us know what you find out.  People are usually pretty amazed by PROMPT when they get in there.  If you get someone who is really qualified and experienced, it may unlock some things for you.  And although the neurologist thing is nice (is it CP, blah blah), I'm just saying from the PROMPT perspective it doesn't matter.  Because whether it's DCD or CP or ASD or whatever as the global explanation, it's STILL motor planning.

[PeterPan]

The therapists you call should be able to tell you what will be covered.

[Guest]

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Edited June 2, 2016 by Guest

[PeterPan]

As for the autism angle! Good to rule it out but in Ontario, at the moment, your girl would get zero in services under the autism umbrella.

 

http://www.cbc.ca/beta/news/canada/ottawa/ontario-budget-ontario-reax-1.3512703

 

So then does DCD (developmental coordination disorder) get her anything?  Would a CP diagnosis improve coverage?

 

Well nuts, if they're not going to cover services for autism, I doubt they care about CP either.  

[Guest]

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[Guest]

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[Guest]

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[Guest]

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[mom22kids]

Wow I missed a lot!  I wish those posts hadn't been deleted so in case they may have been helpful. 

 

My dd gets acknowledged under the disability act due to her Dyspraxia as well she would for CAPD.  But the forms are pretty clear that even if your disorder/illness is not on the list you will still be considered based on the severity of the impact on day to day living.  I have a few friends who get disability credits for Autistic/Aspi kids.

 

And OhElizabeth...I had no idea that PROMPT could benefit me in terms of the swallowing!  Honestly I am sure looking back that it was written in one of the other posts and I missed it but reading it now I can see why there could be some benefit to that!  I was so tired last night I probably didn't see it. Should read through these posts again today in case I missed anything!

[PeterPan]

I'm just saying call and talk with them.  I would call all 4 of the people on that list!  Our therapist talked with us for an hour before we ever went in.  These are people who are VERY COMMITTED to praxis of speech and oral praxis.  That's what they do.  And yes, with what you've described, yes I think a highly experienced PROMPT SLP could give you some progress.  I think that would be pretty high priority, higher than VT, and I'm a huge, HUGE VT fan.  Get the PROMPT eval, have that discussion, get that rolling, then when that is stabilized and into a routine it will be easy to add a little VT.

 

I'm really not wanting to oversell, but PROMPT is often a MIRACLE for people, astonishing.  :)

[Guest]

nm 

 

Edited August 11, 2017 by Guest

[mom22kids]

Well thanks to all of you and your advice I now have my daughter being referred to a Pediatric Neurologist for a full work up!  Will keep you posted.  Thanks again!

Edited June 7, 2016 by mermaid'smom

[PeterPan]

Any news on the PROMPT people?  :)

[mom22kids]

Any news on the PROMPT people?   :)

 

Well I researched PROMPT and then I researched our current OT's training to see if she has been trained in PROMPT as this is her area of expertise.  She however has been trained in Oral-Motor therapy (I forget what level) and so I then researched the strengths and weakness of each.  Found this great article:  http://www.talktools.com/content/PROMPTarticleREVISED.pdf

 

They discuss the differences and similarities of each therapy.  One paragraph caught my attention:

 

Another difference between PROMPT and oral-motor is a sensory basis. PROMPT requires

the child to tolerate constant touching of the back of the neck (to support the head) and the

myohyloid, jaw, lips, nose, and face. This is somewhat difficult in children who are sensory

defensive. Oral-motor therapy is based on sensory principles or targeting tactile,

kinesthetic, taste, smell, and auditory cues. Oral-motor sessions often begin with sensory

massage, deep tissue pressure, and desensitization of the oral-motor system. PROMPT

focuses on tactile cueing alone.

 

This concerns me and makes me wonder if PROMPT is a good fit for us. 

 

At this point however my family Dr has put in a referral for a full neurological work up and a separate referral for SLP and swallowing so I am going to wait and see how that unfolds as it will be covered and if I look into PROMPT independently it will be out of pocket.  Which is fine if I have to but I want to see if I can get her needs met with coverage first.

 

So I am in a bit of a holding pattern until I hear what she will be tested for and by who.

Edited June 8, 2016 by mermaid'smom

[PeterPan]

The therapist who does PROMPT will have the VMPAC, which is the most thorough test for her oral/verbal motor planning.  So I personally wouldn't wait.  I can look into that oral motor thing.  

 

Ok, I read the article.  Sure sounds like turf wars to me.  There actually is an answer on the sensory thing, so I wouldn't let that stop you.  It's *rare* that an experienced therapist isn't able to get the child to accept the input.  There's just a lot they do, when they have enough experience, to get there.  Also, it just assumes that the dc has no volition, no opinion in this.  I was SHOCKED at the range of behaviors in my ds, both in what he accepted early on and how he later began rejecting things.  Basically, even as a 2 yo, there was almost this sense of "I want this so I allow it" and later "I've gotten what I wanted, so I'm no longer allowing it."  

 

So I wouldn't assume it's as dire, b&w as what they're describing.  It sounds like OMT is a really strong tool for the OT.  But I go back to a basic question: how is her speech?  Weren't you saying she still has speech problems?  I forget your list now, but go back through this.  You had unresolved issues that OMT hasn't completed and I was saying look at PROMPT.  OMT has clearly gotten you a long way.  I'm just saying you've describe specific things PROMPT could do really well and that article is really not showing you how the PROMPT therapist would handle those things.  I mean, some of it is really petty.  They're the ones who sell these oral motor tools, so they're slamming PROMPT saying it can't be working because they aren't using their oral motor tools?  Like a PROMPT therapist is REALLY not going to work on oral tone???  

 

I would not conclude anything based on one article and turf wars between therapists.  ALL that matters is your dc's progress.  You have things remaining that PROMPT could treat effectively, and you have access to 4 instructor level therapists in it, any of whom could probably do a stellar job assessing her and telling you within 1-2 hours what is the glitch and what could be done.  Then you could decide for yourself.  

 

You've got a lot going at once.  Me, I'm just not about turf wars like that.  All I care about is progress.  Sometimes a technique is really good but maybe the person needs more experience with it.  There's a huge gap between an OT who learns a (really good valid) technique and does it a couple hours a week vs. an SLP doing (also a really good valid) technique 20-30 hours a week.  Me, I wouldn't quibble over turf wars.  I'd call all four, describe your situation, ask what tests tests they would run, how they handle sensory issues, blah blah.

 

Also, fwiw, there's a lot of changes in how things are done with age.  PROMPT (or any therapy like that) is going to be very different with a 2 yo and with a 12 yo.  I forget your dd's age, but I'm just saying.  As the dc ages there's a level of respect and collaboration that occurs.  I just don't think it would be like you fear.  In fact, with what you've described, if she allows OMT she'd probably be fine with PROMPT, mercy.  

[Mom28GreatKids]

I never dreamed my sensory kiddo would ever let a SLP touch him, but he lets his PROMPT therapist prompt him in his sessions. Some weeks are better than others but when he brushes off her hands, she gets him moving which regulates him and then he allows it again. These therapists are super experienced in doing their thing. So I would not worry about that piece. The OMT might be what she needs, but if there are speech issues, it sounds like PROMPT could tackle both.

[mom22kids]

Oh I am not shying away from it at all just read the article and that stood out to me.  As well my GP is referring us somewhere (to a SLP for an assessment and video fluoroscopy) so I am waiting for that call to see what qualifications that person has and what tests they are running.  She is about to be tested through the roof and I need to take that into consideration.  Yes I want ALL THE PEOPLE to look at her and assess her but she is 12 and I need to keep her needs and pace in mind also.  But yes a phone call is not a detriment to her personally.

 

But more than anything...I am the final stages (hopefully) of my own health issues and this week (and this month) will be filled with Ultrasounds and MRI's (one today in fact) coupled with the fact that my daughter went camping on the weekend and when she returned her entire body shut down overwhelmed.  When she gets REALLY bad her digestive system shuts down also and she get severely constipated and that is the beast I am fighting this week. 

 

She has been bedridden and in agony since Sunday and I have been with her 24/7 only slipping out for Dr's appointments.  Lat night was the first night she slept.

 

So I haven't been able to do much more than read an article last week and shelve it out of necessity.