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    Joined: May 2010
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    3xmama Offline OP
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    Hi,

    I'm feeling a bit overwhelmed right now, so I hope this post makes sense!

    My PG son, 8, was referred to a place in Alabama called the Snider Therapy Center by his teacher (we live in NW Florida). This is a vision therapy center that also employs the use of a vestibular table to 're-boot' the vestibular system through movement, lights and sounds all at the same time.

    He was referred because his teacher believes that he has a proprioceptive disorder which makes it hard for him to keep track of where he is on the page, because she believes he has to 'keep checking' to see where his body is in space and then loses his place. The evidence she's given me is that while he is intellectually capable of doing his math work, it takes him much longer than it should to do things that he has to keep in a column, such as long division or adding/subtracting several 4 or more digit numbers. She also claims that when she lets him sit on the floor away from the other kids and hug his knees, he's able to get all of his work done in record speed. She was also his swimming teacher, and witnessed his fear of putting his head under water, which she says is also a sign. The most telling thing, to me, that something is off is that his lowest score on the WISC was processing speed - it was still in the average range, but 65 points lower than his highest score.

    At the recommendation of the psychologist who administered his IQ test, he went to occupational therapy, but we didn't see a whole lot of results from that, and he hasn't been back in over a year. The occupational therapist said many times that she didn't see that he had much to work on, but I believe that's because most of their clientele that I saw were kids with more severe disabilities, so in comparison to them, he was doing well.

    Other than these things, and the fact that his gross motor skills aren't great (he's clumsy, has trouble catching a ball - although he can - and trouble riding a bike, etc.), he doesn't have any other issues that I can see. Well, he does have some signs of Dabrowski's OE's and maybe a touch of OCD, but nothing that seems debilitating (and I have some of that,too). He seems to like school, works several grades ahead in all subjects, and has loved to read and write since he was 3. While he does try to avoid 'column-work' math, he loves algebra and geometry. He is highly gifted in music, has a great sense of humor, and has friends.

    His teacher was quite insistent that she believed he needed to go to Snider, though, and also that he should go soon, since she said once he hit puberty his brain would basically get rid of what it wasn't using and strengthen the connections it was using. She said that while it wasn't holding him back academically yet, his 'neurology would beat him up' as his work got harder and harder, and it would eventually cause problems for him. I tried to research the business and the therapies they employ, and they all seem sort of 'new-age-y' to me. I don't necessarily have a problem with that, but I am very much a skeptic about things that I can't find a lot of scientific backing on.

    Worried that he needed this and we weren't providing it, though, we decided to take him to Snider to be evaluated. What they came back with was that he needed not only the vestibular table treatment, but also the vision therapy, because his eyes were having trouble working together.

    The vestibular table treatment is where he'll lie on a table that moves either side to side or head to toe, and he'll look at lights that are certain frequencies meant to affect the hypothalamus, while also listening to music and sounds at different frequencies. He'll do this for 30 minutes a day, twice a day, for 12 days in a row, then we'll bring home a 'light box' and have him do stuff at home for 18 days. This is supposed to be a permanent and dramatic 'fix'.

    The vision therapy involves a lot of homework and visits to the center for 4 sessions a month, for a year.

    The tests they said he had problems with, besides the ones that checked his eye teaming abilities, were: one that checked where his brain kicked in in his peripheral vision (they said he had some tunnel vision, which is linked to the autonomous nervous system and anxiety), one that checked his hearing (his ability to hear low frequencies was different in each ear, which they said is a sensory issue, and his ability to hear in general was 'off the chart', which they said sounded good but meant too much information was going in), how well he could identify a shape he'd just seen when it was 'hidden' in a bunch of others (not well), and if he could repeat two words when one was heard by one ear and the other heard by his other ear - through earphones (no - kept messing the words up, which they said meant something was wrong with his 'processor'). These things, they said, are all linked to anxiety, depression, exhaustion, difficulty with harder school work, and meltdowns, among other things.

    FInally down to my questions! Has anybody on here ever heard of this place or any other place that employs these techniques? Does anybody know if this is legitimate? I want to get him help if he needs it, but I don't want to necessarily 'change' him if these things he has (besides the eye teaming thing, of course) are just normal for a PG kid. His hearing, in particular, is important, with his love of music and his prodigiousness in that. I don't know that I want it 'tuned down' if it's not really a problem. And last, but not least, if these people are charlatans and this treatment is bogus, I'd like to know that, too. We don't have a lot of money, and this would not only set us way back financially, but it is also about a 6 hour drive to get there. I'd gladly do it if I thought it was the best thing, but have a lot of doubts.

    If anybody was able to read through that entire humongous post, I really appreciate it and would love some help/advice!

    Thank you!

    Joined: Feb 2013
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    22B Offline
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    How did this teacher gain the expertise that she claims to have?

    Also I think you need a second opinion.

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    KJP Offline
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    Have you talked to his pediatrician about your concerns?

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    Hi there! We have taken a different route to get there but some of your son's diagnoses match with mine. He similarly has a large gap in processing on IQ. He has now seen 2 developmental optometrists and the second one recommended a place that does the same therapy as you have described. I appreciated having both opinions and my confidence has grown through watching both of them examine him.

    The Sensory therapy is called "Sensory Learning Program" and is a proprietary program that no other center can offer within a 200 mile radius which is likely why you have been referred to a place so far away. The website for the program is: http://sensorylearning.com/ You can find a bit more about it there.

    Our doc explained to me that vision therapy will go much faster and smoother if we get the sensory learning treatment and whatever OT we need first. The second developmental optometrist we saw literally showed me my son's rather startling deficits in action and did demonstrations for me to experience the impact of them as well. It was truly enlightening to understand how much compensation my son is having to do while still working multiple grade levels ahead.

    Lastly she handed me a book: Fixing My Gaze--A Scientist's Journey into Seeing in Three Dimensions by Susan Barry. I had been struggling to understand all the connections (as it sounds you are too) and I found the book vivid and insightful in pulling it all together. Dr. Barry is a Neurobiologist married to an astronaut and has a wonderful perspective to explain some of the science behind the experiences.

    We are expecting a call to set up our evaluation for OT and the Sensory Learning Program later this week. Our center here boasts a 92% success rate (parent rating of improvement). After this evaluation (we've already had one for vision/visual motor/visual perception) and the prescribed therapy, we are returning to the developmental optometrist to re-evaluate his vision issues and begin vision therapy.

    I can't speak from the experience of having completed these things yet but we are excited about what we have researched so far. I think you are so lucky to have a teacher knowledgeable about these issues! I've found more answers here and in digging further on my own but many, many things are making sense as I understand the amazing nature of the brain and some of the particular impacts our son has. Everything your son's teacher has said to you listed above fits with what I have been learning except the part about "hitting puberty and loosing what he wasn't using".

    Neuroplasticity is really the good news that earlier research did not give us the full picture of how the brain can still change in later years. The author of the book I mentioned above actually regained her stereoptic vision at almost 50 years of age through vision therapy, something she believed was impossible from her previous scientific training.

    Hope this helps a bit in your comfort level. It has been a lot of new information for us but completely meshes with other learning I had previously undertaken about the more recent developments in neuropsychiatry. The brain is truly an amazing organ that we are only recently beginning to understand in any depth.

    Joined: Jun 2013
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    clb Offline
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    I'm in another part of the country, so haven't heard of that center. However, I would say that of the various activities--including OT, social skills groups--vision therapy has done the most to help my son. He first did some when he was 6-7. Before the vision therapy, he could not catch a ball, could not ride a bike, and could not look directly at a camera for a picture. The VT optometrist prescribed "prism glasses" which we soon began calling "magic glasses" because within two weeks he could do all of the above. He also did the spinning tabletop with sounds. I'm not sure exactly why, but it did help his eyes move side to side better. At age 9 he had a checkup we needed to do more work--he had developed double vision and his brain was beginning to ignore it. This time he was prescribed glasses and weekly exercises at home. We were very consistent with the exercises and they have helped. The double vision is gone, and now he can jump rope! And put together a puzzle! These certainly aren't things required for future success, but I interpret them to be representative of skills that most of us take for granted and interfere with our lives in a variety of ways. When the brain has to spend extra energy interpreting stimulation, it takes away from its ability to do other things. Plus, there are major aspects of social development that relate to our physical abilities.

    I also was a skeptic at the beginning because of reading various debates online. During the first appointment, the optometrist had DS close his eyes and then try to touch a bell that she rang. He couldn't touch it. No big deal, I thought. His eyes are closed. But if his senses had been working properly, he should have been able to reach out and touch it. I could touch it no problem with my eyes closed. When she put the prism glasses on my son, he could close his eyes and touch the bell. OK, I thought, this time it was just luck. But when the doctor put the prism glasses on me, I couldn't find the bell. I distinctly heard it right in front of me and when I opened my eyes, it was to the right. It was one of the most surreal experiences of my life because in that moment, I couldn't trust what my senses had told me. The doctor explained that even with our eyes closed, we are perceiving light through our eyelids and that perception should line up with the information coming in through our ears. For me, it does no problem, and the prism lenses bent light in a way that interfered with my senses. My son, however, needed the prism lenses to bend the light so that his senses could sync up. Once they did sync up, the brain builds the new pathways, and he no longer needs that prescription of glasses. This dramatically affected his balance, ball catching, directing his eyes for a camera, making eye contact in general, etc.

    EVeryone has to evaluate what's going to best help their child, but I can say that as weird and new-agey (that's exactly the phrase I used to describe the exercises) the VT sounds, it definitely produced lasting results for our son. Hope that helps.

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    DD9 has very similar characteristics, with diagnoses of SPD (definitely) and dysgraphia (I'm somewhat dubious). She does better with math when she is allowed to write on graph paper - that's definitely something you could ask the school for. Does he also show executive function deficits (planning a project, estimating how long things will take, organizing his papers, etc.)? DD9 has those, too, although she has made great strides this year with a supportive teacher.

    I would start by looking for an OT nearer to your home who specializes in SPD. It sounds like the one you saw probably wasn't a good fit. I wouldn't travel for a treatment that I wasn't convinced was actually therapeutic. We haven't done the listening therapy that our OT recommended for both kids, either, because it sounded like snake oil to me.

    Good luck!

    Joined: Feb 2011
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    Um, yes, I have experience here. Ds7.5 is pg and was born with severe plagiocephaly (both flattening and facial asymmetry), severe SPD, torticollis (head tilting) - which is somewhat similar to CP, vision deficits, hypotonia (low muscle tone), etc. He's had tons of therapies/ interventions - including 5 yrs of ot (including3 years in a sensory OT gym), 5 yrs of pt, and 2.5 years of vt. This last year he's been in and out of neurofeedback and water therapy (which also can address vestibular or body-in-space issues).

    The symptoms that you described (tracking, clumsiness, gross motor skills, vestibular, body-in-space, proprioceptive) can be addressed with VT. The results can be quite dramatic over time. Yes, VT can be expensive, a long process, and not a magic cure. Yes, been there, done that. There's daily vision exercises - some of which your child will not like because they have to use their brain and body.

    With VT (and NFT - neurofeedback), you're basically re-wiring the brain and how the eyes function with the body. It alters a person's perception and sense of reality. It forces a child to accept the new reality and way of viewing life. And let's face it, this is not always smooth sailing or achieved by simply sticking a pair of glasses on.

    With VT, a behavioral optometrist will prescribe ambient glasses (20/20 vision is about acuity and totally different) and create a specially designed program for your child that involves daily vision exercises. These daily exercises should take 15 minutes or so - that's with a cooperative child. These daily exercises can take considerably longer with an uncooperative child!

    OT can address SPD, proprioceptive and vestibular issues, but only to a point, I believe. If there are outstanding visual perceptual deficits or something more intractable or ingrained like my Ds had (which it sounds like you have), you're only going to have so much success before plateauing.

    The visual processing system accounts for an astounding 80% or so of our senses. As a result, if something goes awry with it, it can create quite a bottleneck.

    Here's what I would do. Read about vision therapy. My son's former behavioral optometrist has a book (http://www.amazon.com/Seeing-Through-New-Eyes-Developmental/dp/1843108003), but there are others on the market and should be available at your local library. There's also websites (http://www.covd.org/). You could Google my son's former behavioral optometrist (Dr. Melvin Kaplan) or Dr. Jeffrey Getzell in Chicago - both are old timers and well regarded in the field.

    1) I would schedule a full perceptual eye exam with a behavioral optometrist - preferably an old timer with tons of experience like my son's (who should be retired now). I know Dr. Melvin Kaplan and Dr. Jeffrey Getzell are names that might help. You might want to take a look at their websites and see what they say.
    2) I'd schedule an OT sensory exam.
    3) I'd look into neurofeedback and/or water therapy.
    4) Take a deep breath and say you can do this. Take one step at a time. Remind yourself Rome was not built in a day.

    I know you may feel like the teacher overstepped the line (and I wouldn't disagree with you in feeling this way). However, I think the teacher was genuinely trying to help and concerned. And though she may not be qualified to say so, she isn't far from the mark by what she said based on what I've read from your post. I was told similar things over the years by various specialists.

    Before we started neurofeedback last Aug, we saw a 2e expert. She said Ds still had outstanding SPD issues despite years and years of therapies/interventions. I didn't want to hear it at the time. She said that I had to treat DS7 as a special needs child rather than a pg and to focus on addressing the special needs first. Since my son had 2.5 years of VT, we talked about NFT. She felt that NFT might get to the root of Ds's issues and the neurological wiring. Well, NFT looks at actual brain wave activity of DS's brain and I can say that they can get to the root of the matter, though not overnight.

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    3xmama Offline OP
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    Thank you all so much for your insight and help! I am thrilled to have a place to start to do some research now, and to be able to hear from people who know what we're going through.
    I am planning on trying to get a second opinion, but was so overwhelmed I didn't know where to begin before. I appreciate all of your suggestions!

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    Hi,

    I'm new to the forum and replied to this last night, but since it hasn't shown up, perhaps I hit the wrong key...

    Of all the OT, social skills groups, and other interventions, Vision Therapy has had the biggest impact for my son. He did VT for about a year, starting at about 6. At that time, he couldn't ride a bike, catch a ball, look straight at a camera to take a picture, or read a line of words across a page despite know what all the words were. The optometrist prescribed "prism glasses", which we soon began calling "magic glasses" because within two weeks he could do all of the above. He also had been involved with some other kinds of testing during this time and his assessments before and after the VT were different enough that the professionals came to us and wanted to know what could explain the difference. Our OT person led the spinning-table-top-to-music exercises and we did some other exercises at home. He also became less wiggly in his seat and stopped making funny facial expressions that apparently were related to a concerted effort by his brain to move the eyes.

    His reading had caught up to grade level by age 9, but was still below what was expected for him and he was skipping words and still getting lost on the page. We visited the behavioral optometrist again and discovered that he had developed double vision, and that his brain was beginning to ignore it. We had a new prescription for glasses, and a series of weekly exercises that again helped a lot. No more skipping words--unless he's just plain trying to read too fast. And he can now put together a puzzle and jump rope! I don't really give a hoot about puzzles or rope jumping, but someday I would like him to be able to assemble a bookshelf and drive a car. These smaller tasks are representative of the skills he will need to do those bigger things down the road. Most of these are things that most of us take for granted because our brain just does them. My son's brain was working so hard to do basic tasks that it created fatigue and pulled energy away from other basic tasks. He needed extra stimulation for his brain to make those paths.

    I was also originally skeptical about this process based on reading differing opinions online. In our first visit with the optometrist, she asked my son to close his eyes and then touch a bell that she rang. He couldn't find the bell. I thought, of course he couldn't find it with his eyes closed. But I could find the bell with my eyes closed no problem. When the doctor put prism glasses on my son, he could find the bell with his eyes closed. When she put the prism glasses on me, I distinctly heard the bell ringing directly in front of me, but couldn't find it. I opened my eyes and saw it was to the right. The doctor explained that even with our eyes closed, our brains perceive bits of light, which are matched up with other sensory input. Since my brain wiring is normal on this front, the prism glasses interfered with my perceptions. For my son, however, they bent the light so that the sensory input from his eyes matched up with the sensory input from his ears. Once the brain practiced making those circuits, he wouldn't need those glasses anymore. The whole experience was truly surreal because a) I couldn't trust my senses about where the bell was and b) I realized that my son couldn't trust his senses all day, every day.

    I would recommend calling the center to see if they can recommend someplace closer to you. Or could you limit the office visits to 1x a month, etc. What they originally suggested is probably the "ideal" clinical plan, but there is likely something in between the ideal and nothing that might work for you and your son. Good luck.


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    3xmama Offline OP
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    It's my understanding that she worked as a nurse in a facility that dealt with neurology some years ago, and she's continued to follow the field. She also has worked with many special needs children - and directed them to this same center - for several years. I don't know if that makes her right, though! smile
    I am planning on getting a second opinion - wasn't sure where to start until I read all of these replies. I am so grateful for this forum!

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