Well my daughter didn't seem to care either way so it would be easy for me to just request the one person who is certified. Which I will - see if she is a good fit at least. The place was amazing. Clean, bright, airy. Huge open gym like space with trampolines, and equipment everywhere. There were kids present doing therapy and it was a supportive, friendly environment. I was really happy overall but was not that happy to see that most people are trained "in house" with no formal certification. But then I wondered if maybe it is not as "required" as I would assume and wondered what other people have noticed where they do VT? And I agree personality and trust sometimes outweigh certification.

I took my daughter for her VT assess yesterday and they noticed a few things. 1) she had some minor improvements in a few areas from her last assessment. She scored better in some depth perception stuff etc which I expected given how much we worked on it. 2) They noticed a big decline in her ability to see things close up. It was a 2 hour appt so I may be confusing some of the info/terminology but in a nutshell...when she looks off into the distance she has smooth fluid movements, she has a focus? of 1 diopter which is what they want to see. Her distance looking skills are beautiful in the Dr's words. But when she looks at things that are near she has some issues. They like to see people use their eyes in the 4-6 diopter range and she is still only at a 1diopter. So she is looking at only a small pinhole of the page and just moves that focus point all around to see the entire page. She does this to block out the "mess" of the page which is perfectly in line with her personality and her OCD-ish tendencies. She also has very jerky eye movements. They are not smooth and fluid but more like the second hand of a clock. They also checked 5 of her primitive reflexes and at least 3 gave evidence of being active. They provided me with this feedback but the formal test results will be given to me at an appointment in Aug. So there is no question I am going to start vision therapy. I knew that before we went. But...in terms of finding the right place... I looked at the website this morning to see if there was a bio for the lady who did the bulk of the assessment - we liked her and could request her to do the therapy - and there was only one person who is a certified vision therapist. Is that typical? The girl we liked came to the company in 2009 as a receptionist and has worked her way up to this position but no mention of being certified? Shouldn't someone certified in OT or VT be in charge of integrating primitive reflexes? Just wondering what others experiences have been? Thanks!

Well we don't have the exact figure yet but this should certainly allow me access to any therapy that she needs!! :)

YAY!! I just received the Gov't assessment of our application for the disability tax credit - they approved it retro-active for the past 9 years so we should be receiving a pretty good chunk of change. This will free us up to get her the services she needs over the next year or two without having to go further into debt! Such a relief!

Well when it rains it pours. Her digestive issues resolved itself but the dizziness remained. Took her to the Dr today and she has Vertigo!

Thank you!! Yes I think this has been a TOUGH year in my house and with the school year winding down we are all just DONE. I think we need a few weeks to decompress and get our bearings before we dust off and begin the next steps. I think if I called a PROMPT specialist right now I would only be half focused and miss so much. I need to finish off this month of testing for me - and finally put all of my issues behind us - which seems to be what everyone thinks the outcome will be so fingers crossed. And then start the neurological assessment. Once i Have that first appointment and I see what the plan is going to be for her I can make decisions if I need to add my own supplementary actions or if their plan seems comprehensive enough.

Oh I believe (so does her GP) that she has GLOBAL low muscle tone - hence the swallowing, digestion issues. I have spent the last 2 nights giving her abdominal massage - but no technique - just good ole fashion mamma instincts! LOL She has been drinking lots of tea and liquids. Benefibre etc. Last night the pharmacist recommended Milk of Magnesia and I think it actually worked! She is coming to terms with the fact that camp might not be her friend. She also realizes that she needs to start making the connections and giving her body the rest it needs etc. We shall see...she loves these damn camps so much. This is by far the worst it has ever been. Usually she needs a day in bed watching TV. I think she went into this camp exhausted and that caused a lot of problems? Add to that the fact that my son has a bad case of pink eye and I want to dig a hole and not come out! LOL!

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.

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.

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!

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!

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?

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?

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.

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.

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.

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

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.

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.

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!

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

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.

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.

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.

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?