Its odd...my dd has been so accepting of her accommodations but is digging her heels in about this FM system?!? She is the only one in the class sitting on a yoga ball, or using thera-putty, or with a zones of regulation binder on her desk showing what zone she is in? But an FM system is her hill to die on??

Yeah visual supports wont work for my dd either as she has Visual Processing Disorder! When you have Sensory Processing Disorder every single sens you have - sense of time, sense of smell, sense of force, distance, taste etc on and on all have processing issues. So the Auditory people suggest visual supports and the visual people suggest audio supports! LOL Such a catch-22 Without doubt I can confirm the exhaustion aspect of her issues. This poor kid works 15 times harder than her peers just to keep pace with them. As she is aging she isn't even able to keep pace anymore.

Oddly enough we suspect that my dd cannot listen and write either. In math she is no longer required to do so. Based on what you just posted I may request it across the board now! Thanks!

Yes she had a Psych Ed Eval done and there was some hearing "concerns" for lack of a better word but they were minimal compared to some of the other things the report discovered. And yes I am aware of how difficult it is to ensure EACH teacher is making eye contact, confirming she understood directions etc. The FM systems have evolved in some schools/ school boards. Some now place a speaker in the area of the child (as opposed to the ear buds) and some have a speaker built into the walls in certain areas of the class and it benefits more than one student struggling. She advised looking for a newer build school as opposed to the decades old school we are zoned for next year. Lots to consider!

And it was just in my basement! Years ago we bought an Xbox for our kids (with Kinect) it has been cast aside in favor of a new WiiU and hasn't been touched in a few years. This Summer my dd has become rather couch potatoey and our OT yesterday provided some couch rules. The end result was that we decided to move the old Xbox upstairs and get the kids moving by dusting off some of the Kinect games (they really get you moving). Well lo and behold there was a long forgotten game called Brain Games. We dug it out and I am FREAKING AMAZED by how much it is going to help dd! In a nutshell you perform a series of short tests (very fun!) to determine your brain age. Then the game (based on your unique results) gives you a brain age - which is somewhat irrelevant - and I am qualified to say that because it said I was 60! ;) Then each day you are meant to do some brain training - again designed around your unique test results with the goal being that you will improve your brain functioning and get a younger brain. The games are FUN, interactive - lots of kicking, punching - and the game adapts if you start to struggle so that you don't become frustrated. It works on memory, math skills, doing activities with your left hand (steering a pac-man away from being eaten) while your left hand has to touch fruit when it appears. It is AMAZING! More importantly my dd has become addicted and says she is going to do 15 mins EVERY DAY. She really wants to get a younger brain! And I won't lie we all did the test and she was given the youngest brain age of everyone so that was a proud moment for her. This was not in the slightest way a game that drew attention to her shortcomings! Anyway it is an old system and an old game (I only paid $19 for it new) and I bet it could be found for dirt cheap! Cute video of how it works:

We went for testing today and will get a formal written report in the mail in 2 weeks but while there the tech confirmed everything we were seeing. She has a slow auditory processing speed. Some memory issues. She said she observed that she wasn't always able to remember some words long enough to process them. But that if she did process a word/sentence that she held on to it. Also that she recalls things in the wrong order. She also listed a host of recommendation: Preferred seating, eye contact, repeat back instructions (all standard) as well as an FM system in the class - which my dd has fought against. So anyone BTDT and have anything helpful to tell me? Any tips in class that worked best? Any games activities to improve this? I though it was best to ask the real experts ;) Thanks!!

She has AWFUL proprioceptive!! I mean awful. Examples: When she swings on her therapy swings she says can someone push me - even when she is really flying - she is *starting* to realize that she is moving. We aren't doing Astronaut Spinning because she just had Vertigo but right before we stopped she could spin super fast for a long time and not have any sense of it. She has issues with food being "gross" so we just started blindfolding her while she eats roasted chicken - a fave food but she is grossed out by the skin etc - so she stabs at the plate and has no idea if she gets food on her fork. She just keep stabbing and lifting an empty fork to her mouth - sometimes it has chicken sometimes it does not. If she stabs a HUGE chicken leg and lifts it to her mouth and halfway up the leg falls off she is unable to sense the change in weight and still puts the fork in her mouth. She drinks water while she eats and the first time she tried to drink blindfolded she had to lift cup with right hand and find the opening with her left hand and bring the mouth of the cup to her mouth. She could easily not find the mouth of the cup and pour it over her shoulder. For fun I placed a full cup of water (big plastic tumbler so heavy when full) and and empty plastic tumbler (very light) - she just randomly grabbed cups and tried to drink out of them. Blindfolded she was unable to sense which had water. When we gave her one in each hand and she holds them simultaneously she is able to tell which is full of water. Its mind blowing!

She is 12 years old. We also just a call tonight (FINALLY) from the pediatric neurologist to set up an appointment for a full work up which would have NEVER happened had I not found this board and many of you suggested it!! As well on Thursday she has a CAPD test. So hopefully some answers soon!

Yeah that is my plan of action - taking this perspective to the VT place and getting their feedback. That appt is early Aug so in the meantime I will research research research and dig for some more info. At this point I think VT could still be a viable option for us.

Well from what i gather...but will get clarity at next appointment. My OT is currently taking a two pronged approach. Teaching my dd how to get and keep her SPD under control all while encouraging these reflexes to settle. So she sees it as equally important. Learning how to read your body's cues and triggers while doing the "therapy" that integrates reflexes. The ultimate goal being that she becomes so efficient and skilled at reading her body that she just naturally keeps the reflexes at bay. Bearing in mind that one big sensory overload or traumatic situation (whether real or perceived) could overwhelm her SS and all these reflexes will kick in instinctively and she will have to start over.

Yes that is a GREAT explanantion. Essentially my OT is saying that my dd hasn't got control over them yet. That she needs to first learn to control her sensory system. Once she has better control of her SS she will be able to control her PR better and they won't be so dominant. She says that currently at the stage we are at my dd is able to supress them for about 24 hours and they become triggered by an overwhelmed sensory system. So she worries about starting VT at a place who won't move forward until the reflexes are completely integrated. This is where her doubts come up.

I didn't ask for a suggestion and she didn't recommend one. She works in a VERY large scope. She has clients 3-4 hours away from me in every direction so some of those wouldn't be an option for me. I think she just got off on the wrong foot with this eye Dr. This Dr. touts herself as being a Vision snob and everything else is secondary. My OT would likely agree that she is a Vestibular snob and everything else is secondary! LOL So I think it is just a case of not seeing eye to eye. The eye Dr does matter but they really are 2 different "businesses". The eye Dr has one location where she does reg eye exams, glasses etc. And the VT clinic is down the block. It is managed by someone other than the eye dr. She is almost the "brand" name. There is a VT manager who seems to run that show. So yes eye Dr. is important but I think this set up might be different. But the improper superman pose was done by someone who could potentially be tasked with integrating my dd's reflexes. Her bio says she started with them in 2009 as the receptionist and has worked her way up to this position. So there are a few concerns. But sadly for my area this is probably one of the better clinics. And personally there was a LOT about the place I liked and was impressed with!

I agree that I need more than ONE person's opinion regarding whether or not you can integrate reflexes of someone with SPD - which is why I started the post - to see of anyone had real life experience with the situation. But maybe I need to find a SPD forum? There is no real info about it on the internet. I've been looking. But I think there are exceptions to every rule. And in fairness she said they can be integrated - but unlike the majority of the population people with SPD will have trouble KEEPING them integrated. But she didn't give me anxiety about the fact that she has SPD going on...I guess my post implied I was freaked out by it? But it was more that it was such a head trip that I have to readjust some goals and expectations in regards to getting these reflexes integrated. I just had no idea that it was unrealistic! I think she was equally surprised after all our conversations that I wasn't aware of this! LOL But she isn't a downer therapist or harebrained and I would hate to portray her that way. Nor is she perfect. When she first came to us I felt like she was sent by God. She was a freaking messiah to me because she not only helped us when no one else knew how to but she was brilliant in her approach. The impact she has had on my dd is shocking. But a year and a half into this relationship with her I see her more accurately. I know she is not perfect. I know what her flaws are. I know how her past experiences have colored her perceptions. She is not against VT. She has other clients who do VT and she thinks VT works wonders on those who need it and can benefit from it. Interestingly enough - she does not like the Dr at this particular VT place. Years ago she worked in a clinic and this eye Dr. came in and spoke about VT (when she was first opening her clinic) and how she could be a valuable asset in some of the therapy these OT's were doing. Apparently she spoke a lot about reflexes and blah blah blah and had a lot of her info wrong. She also gave them the false impression that she was the one in there working with these kids when in fact she is not. She is just the name on the clinic and it somewhat runs independent of her although she does the visual portion of the assessments. All the VT is done by the team over in the VT clinic. None of the OT's were impressed. Of course my OT didn't offer any of this up I've had to drag it out of her - and none of it affects my decision to proceed at this clinic. I personally like the Dr and the place and they seem on top of it all. But I do have concerns about the lack of certification of the staff AND I know that for example when they checked her TLR reflex that they didn't keep her in the superman pose long enough to know if it was still active. Little things like that. But undeniably something has been holding me back from the VT and it's not the cost. When we went there 13 months ago I didn't sign up then. I knew that she wasn't ready. Now here we are looking at this option again. I absolutely have concern that she might be one of those kids who VT doesn't work for. There are soooo many ways that I could spend this money on other things that she could also benefit from that I don't want to throw it at a "maybe". Lots to think about.

Thanks for sharing! This makes me hopeful that she could still benefit from some form of VT!

I am hoping they are willing to proceed and not be hung up on HAVING to get these reflexes integrated first?? I am mostly shocked to learn that people with SPD will never fully accomplish integrating them! I sort of had this image in my mind that once we get them dealt with that a great many of our problems would resolve themselves so digesting the facts that this isn't likely is a lot to digest.

Well she isn't suggesting that I don't do the VT. She just wants me to be clear that if I am paying weekly and the proposed plan is that we first integrate the reflexes and THEN do the VT that my 38 weeks could be unrealistic and/or I may be flushing money down the drain as these reflexes will keep popping up? I got the impression that she agrees that the Vision needs to be fixed and she seemed to be a fan of getting her glasses to make up for the diopter issues they are seeing. Basically I said that I would go in and explain to the VT about my concerns regarding them wanting to integrate relfexes BEFORE we get started on the VT and explain that her SPD may interfere with that progress and is there an option to sort of shift the initial focus from integrating reflexes to just getting started on the eyes. Our OT does work on integrating reflexes (in unconventional ways) but equally spends her focus on teaching my dd to learn the cues to keep herself regulated. So we follow the zones of regulation. Not sure if anyone is familiar? Three colors Blue is Eeyore (too low) Red is Tigger (engine running too high) and Green is Winne the Pooh. You want your engine to run in Green. When you start to feel your self running too low or too high - which happens when your sensory system is overwhelmed you do certain activities to bring you back to green. The activities/movements are dictated by what color you are in. So by teaching her to prevent these dips into red and blue she is learning to manage her SPD symptoms and keep her sensory system running smoothly. When she is in green her primitive reflexes can be integrated thus minimizing their negative impact. BUT...if she doesn't read her body carefully and allows herself to run deep into red (over-regulated) or into blue (under-regulated) her primitive reflexes will kick back into gear in an attempt to help her. So yes while we work on Integration through play we equally work on teaching her to read her body as well as a lot of vestibular/propriopreceptive work. This has had the biggest effect. I see the improvements in her also. She is a child who mostly goes to blue (Eeyore) and I used to have to be the one to catch it for her. Now she is able to tell and often asks to do some therapy to fix it or on occasion invents her own funky stuff to help herself. In fact recently I commented to her how proud I was that she caught herself and did her own therapy and got herself out of blue and she replied. I am actually still "blue" on the inside you just can't tell on the outside anymore. But inside I am Blah!. That was super impressive! 6mths ago she would not have been able to articulate that. And yes OT is cheaper than VT by $30 a session.

So as you may remember I took my dd for Vision testing to inquire about starting her on Vision Therapy. Here was the thread: http://forums.welltrainedmind.com/topic/617921-vision-therapy-assessment-yesterday/ So our OT came today and I gave her the run down on the preliminary results (in thread above) knowing that I will get a more formal report in Aug. But none of those details are really relevant to my current...dilemma/mind bender? So in a nut shell the VT consists of them first integrating the primitive reflexes and then moving on to fixing her visual struggles. When the OT came today - whose opinions I regard highly - I gave her the synopsis. She, like myself was thrilled with the improvements in depth perception etc. She was not shocked either about what they observed with her near vision. When I told her about how they checked her primitive reflexes things got interesting. This is C&P'd from our therapy journal but this is the synopsis of what I told her they tested like and what they saw. First they tested her Tonic Labyrinthine Reflex by getting her into the Superman pose My suspicion is that think this is retained in Sara but I believe it is not. Next they had her get into child’s pose (yoga) and at the count of three lift her bottom to get her into an “On all fours†position while simultaneously lifting her head and looking forward. I think this was testing the Sagittal Tonic Neck Reflex and I think they feel this reflex is fine. Then while on all fours they rotated her head left and right checking her Asymmetrical Tonic Neck Reflex (ATNR) and it was evident in how she adjusted with her shoulder and elbows that this reflex is still retained. Next while still in this position they ran a smooth wand down her spine and she wiggled and wriggled indicating that her Spinal Gallant Reflex is still active. Lastly they sat her on the mat with her legs fully extended in front of her. They placed a bolster behind her (lower back) and asked her to fall back and trust that they would catch her. She was virtually unable to do this. She never allowed any part of her body to relax even once fully back she never allowed her head to fall into their hands. I got the impression that this was the most extreme reaction that they had seen. I am also assuming that this was a measure of her Fear Paralysis Reflex but again I am mostly guessing as I still do not have the formal test results. The testers opinion was that 3 of the 5 were still active. My opinion is that all 5 (all 7 actually) are still active. So for a fact I know that they tested her TLR improperly because they only asked her to assume the position and did not ask her to hold it for more than seconds. Our OT agreed 100%. Second OT said that when the tested for Spinal Gallant that because of her particular SPD that a light touch would (and did) activate the reflex but that a more firm touch would not have. This led to a whole convo about SPD and primitive reflexes. According to my OT she says that with SPD you can never truly integrate the reflexes. That you can GET them integrated but that if the SPD is triggered - bad sensory day etc that they kick back in. That they will flare up and activate when her SPD flares up. The goal for someone with SPD is to "integrate" the reflexes over and over while teaching the child/person how to manage the SPD to prevent the flare ups that reactivate the reflexes. Worth noting that this OT has SPD and all her reflexes are not integrated. So she says that a) If the VT place is waiting to have these reflexes integrated before they begin working on the vision component I could go WAY over the 38 weeks that the VT place predicts it will take. b) they might think they are integrated - because it is possible to integrate them - but that if there is an SPD event that activates 1 or all of them that we will just be back at square 1 potentially week after week. c) If they are unable to integrate them (which will be tricky given the stage we are in currently with her SPD) than she might just be lumped into the category of people who VT just didn't work for, for some unexplained reason. But of course the reason is that you cannot ever truly integrate the reflexes of a person with SPD. So my mind is blown and I am trying to digest all this. Thoughts? Of course she thinks I should look into getting her glasses and/or hear out the therapeutic options they feel will help with her current visual struggles. But to be realistic (even to them) in explaining that they will not achieve integrating her reflexes permanently. I just don't know what to think?!?!

We first had her assessed 13 months ago and knew her issues then we just decided to wait on the VT for a variety of reasons. But yes I realize that with help (ie: VT) she may overcome this and if part of that plan includes me correcting her each time she skips a word I will happily. I was just making a point that our kids are wired differently and sometimes we just need to learn to accept it and be ok with it so that they are ok with it. If we keep holding them to the same bar as neuro-typical kids they will always feel like they come up short. When we first started down this road - early on when things first started to "slide" with her. I assumed it was laziness or disinterest and pushed her in ways I never would now. When she would skip a word I would say "you skipped a word" She would say she didn't I would insist no she really did. She would start to get frustrated. I would ask her to reread and she would skip the same word. I would tell her. She would get more frustrated. I would get more frustrated. Eventually I would be using my finger under EVERY word in some dramatic fashion until she FINALLY read some invisible word. Her face would fall. In the end she was miserable and felt less than and I was miserable and frustrated. Nobody won. Now if she misses I say - Oh you missed a word. I just say - it should say "blah blah blah". It's a gimme. I can't "correct" her disabilities away - if I could I would have years ago when I corrected her with EVERY skipped word. This child of mine confuses everything. LOL! She reads recipes wrong, she reads time wrong, she reads directions wrong, she forgets to put her wet bathing suit in the sink. If I fought against the way her brain works and tried to "correct" all of this out of her she will never feel good about herself. In fact sometimes when she bakes in the kitchen and it doesn't turn out I say - Oh I think I set the oven to the wrong temp - my bad! I used to say "how much water did you add? Did you remember the eggs?? Looking to show her how she screwed it up. Now - meh who cares!

So happy that my words resonated with you and hope that you see some of the stress relieved as a result!!! :) Oh and my dd is 12.5 also!!

I think for some kids my dd is particular (she also has an LD SPD Dyspraxia and some vision/hearing issues) it is honestly just SO FRUSTRATING to have it pointed out how many "mistakes" you are making. I get it. I can't imagine how depressing it would be to have every thing you attempt be corrected. Piano, math, reading, spelling on and on not to mention just how much as parents we are on them about brushing their teeth, forgetting gym shoes, forgetting to bring home an assignment. I know you said that when it comes to homework you need to correct him immediately...but maybe you don't? Maybe if the task is piano you could just let him "piano" and when the session is over rave about how well he did with xyz and then point out that you also noticed that he made a few mistakes and where and tell him to keep that in mind for the next time. Then prior to the next session remind him of what he was going to work on. Maybe provide feedback in one conversation? Same with school work. I have come to realize that my dd's LD means that we need to accommodate her brain. She is NEVER going to read without skipping words. Unless it is math (where every word has impact) then we allow her to skip words. She usually pieces it all together effortlessly (which is a necessary skill) on the off chance that she says "That doesn't even make sense?!?!" after she reads something I usually say "Well I noticed you skipped a few words in this sentence...read it again and see if that helps". I dunno...it's hard to find the balance. But I saw a poster once that said "Never put your child's grades above their mental health" and it stuck with me. If he is getting corrected more than the average kid (as is expected with our kiddos) and it is causing him to lash out...than maybe the priority should be on stabilizing his emotions and self esteem and saving some of the corrections for later?

I have an emotionally sensitive child who used to become GUTTED when "corrected" or told that he did something "wrong" etc. I have learned to allow a day to pass before discussing how I feel about what happened or letting him know what will happen if he does it again etc. Clearly this won't work in EVERY situation and I am not sure if you are talking about correcting him as in behavior or correcting him as in school work? But here is an example from a few years ago that it works for to show you what I mean - 2 years ago ds was at a friends house. Friend got the neighbors BB gun and in fun used it to shoot at both MY ds and another boy that was there. My ds never told me. The other boy had a mark and hos parents saw and were pissed and called and there was a whole big situation. I was almost 8 months before I heard of it and ironically it was his teacher who told me and assumed I knew the story because as she understood my ds was shot also. I had a million questions for my ds and his story was that it was not his buddy who shot him but the neighbor kid who owns the gun. So way late to the game I get the story from the parents (that is a whole nother story and I was pissed that no one ever mentioned it to me) and they gave me the REAL story and how it was in fact their son who shot the two kids and that my son was "just being a good friend" and covering for his buddy. I wanted to rip them all a new one. I wanted to punish my son for lying etc. Instead I told him that I knew that he lied to me and that his friend did in fact shoot him and that we would discuss it later. So he cried and wailed about how dumb he is and how he hates himself etc etc. And I just supported him and talked him down and reassured him that he just made some poor choices. A few days later I brought it up again and slightly scratched the surface of how he lied and that it could have caused problems and let him digest that. No tears. A few days later I brought it up and elaborated on how dangerous it was too play with guns etc. Then I went on to discuss lying and me needing to know I could trust him etc. I also let him know that the next time there would be XYZ consequences. This was a technique that was suggested by the school guidance counselor who has also witnessed my sons extreme reactions to getting into "trouble" at school. Literally one day three boys were chatting when they shouldn't be and the teacher asked them to stop and my ds was devastated. Sobbing unable to bounce back from it. He had to be redirected and taken from the class to calm down! She said the point is for kids to LEARN and you need to have them in the head space where they can hear what is being said not just reacting to it. This worked for us and now it is unnecessary for the most part.

A lot of what you are saying makes sense and makes me more comfortable with the thought of having someone who is NOT an OT work on the reflexes. Thanks!

The 38 weeks does involve the VT and they acknowledge that unforeseen circumstances could add a few weeks to that. I plan on asking for references when I get the formal assessment. But I am always wary of those..no one gives out references to unhappy clients. So I am sure they will check out kwim? They are SUPER organized I could see that in my visit. And for sure she will be given homework. I loved how professional and friendly it was, Very warm and welcoming. Very high tech and yet comfortable. I was just wary about the lack of certification from the staff. I will know more at the formal results meeting I guess. These are all great questions for me to ask. Thanks!

Well that's the thing I am struggling with/wondering about...they do integrate the reflexes in house...but...there is no OT on staff?? They all have a variety of experiences and ONE is VT certified. Do you need to be an OT to integrate reflexes effectively? I just have no idea so I am concerned-ish. lol!

Well I won't meet with the Dr and get the formal report/plan of action until Aug. But I asked loads of questions and it was evident that they will first work on the primitive reflexes (in house - the girl we worked with is able to do it if we opt for her) and get them integrated first and then move on to the other treatments. It is a 50 min weekly appointment and 15-20 mins of exercises daily at home. She guessed we would be a 38 week program.