Gifted Issues Discussion homepage Forums Twice Exceptional UPDATE Vision Therapy Testing

Thanks so much Portia! The docs know each other and the local practice asked me to finish testing with the first doc and then let her review the tests planning to fill any gaps if needed.

Today was the visual processing and it was PHENOMENALLY easier. Next week we can set the appointment to discuss results. It seemed clear that for the most part motor is the big big issue here.

Our results visit didn't go as well as I hoped. The doc was running nearly a half hour behind schedule which left us only 20min to discuss our son's testing results before we had to leave to pick him up from school.

She said he was a real puzzle to her because he was so smart and should be very behind on reading. She admitted they had had difficulty in doing his testing and getting accurate results. (I believe this is in part due to the incompetence of her staff. They seem overwhelmingly mentally slow to me.) She did not give us any written report, was unsure how long therapy would take (because she felt unsure how quickly he would catch on since he was so smart), and only wanted to give us copies of his testing within a written report for school which we could use to apply for a sec 504. It was a mess.

However there were some clear things on the testing which match what I had seen and figured out. It seems Convergence Insufficiency and Ocular Motor Dysfunction are the big issues. I found the pictures of how these disorders affect vision very helpful: http://www.bernsteincenterforvisual...-problems-oculomotor-dysfunction-or-omd. My son says these are pretty good representations of what he sees when he is having issues. I have printed the content from the appropriate pages to help me explain this to our close circle.

I'm very frustrated with the time we have put in to this so far and the lack of solid high level information we have gotten back. It was like pulling teeth to get the terms for the visual issues he has so I could research myself.

She kept wanting to talk about how her therapy makes change "at the cellular level" and so it is faster and sees results quicker than the old methods. Anybody know what she is talking about??

Sorry your meeting didn't go as well as you hoped. No idea what she meant by quick results from therapy on the cellular level. Wonder what that means?

We were also told that she couldn't believe ds could read so well, but she thought he only used 1 eye to read- was compensating. Will be interesting to hear and "see" how your ds and my ds does with VT.

Hang in there!

HappilyMom- btw I pm'ed a question.

Yesterday was a whirlwind. We saw the new Developmental Optometrist yesterday without the help of our testing results from the first doc because she continued to blow off giving us any written documentation. It was promise, delay, promise, claim misunderstanding, promise, more delays. We were so turned off and angry from just that process that I can't imagine ever working with her even though the report was very helpful and informative.

But on to the new doc. She was such a resource! She recognized my binder from the out of state Neuro Psychiatrist, answered my high level questions about comorbidity/SPECT scans and the relationship between it all, and she and her staff were amazing with my son!

She got him almost immediately and he complied easily with each task she asked for over an hour. For instance when testing tracking initially he moved his head to follow every movement so she had him imagine a glass full of water balancing on his head (he changed it to a "bag of important computer chips"). As we went she drew my attention to different notable issues in how his body responded (without him hearing her "notice this or that" statements to me).

It was startling to me to see the deficits. She also did a number of demonstrations with me to show me how different aspects of his deficiencies impact him. It was really fascinating.

She wants us to address the Sensory Processing issues and OT for gross and fine motor delays before starting vision therapy. She said that addressing those first will allow VT to move faster and be more effective. She also did some work with lenses for him and I saw the immense difference in his ability to read with and without them. He is going to wear the lenses fulltime until our next appointment with her. She wants us to spend the next 3 months getting those other pieces in place and then reassess his vision at that point as well as put a 504 in place.

She had an intensive therapy place to recommend that was 35 miles away which she said has a proprietary program that cannot be offered within a 200 mile radius. It looks really amazing! They seem to work with all the issues he has and he is begging to go from just seeing the pics of the place. They do a sensory learning program that seems really interesting and boasts a 92% success rate based on parent surveys. That program does 30 min twice a day for 12 days followed by 18 days of morning and evening sessions at home involving a portable light device.

Besides the research on therapy options the new doc also sent me home with a notebook full of info including a reading list of books and websites and a book called Fixing My Gaze by Susan Barry. I have a lot of homework to do.

I found her very knowledgeable and helpful. Her office was much more child friendly and was clearly focusing on developmental optometry rather than primary focus being traditional optometry. However, when we had talked on the phone she talked about doing vision therapy in the office with additional practice at home but when we saw her she gave me a notebook with exercises to do with him at home even though we would not be back for 3 months if we follow her plan. I also didn't like as much just doing the low tech testing and not having data points. I think she is relying on eventually having those data points from the other doc.

Obviously we do have lots of comorbidity so I agree there is much to unravel (she talked about it like an onion) and we have to start somewhere. I think I am disappointed at needing to work on VT during the school year but travel to the therapy center will be easier now than then.

So this was long but lots to report.

HappilyMom- that optometrist sounds amazing! So glad you found her! I know you have many things to look at, but you've gotten started and have some great leads as to what direction. Sounds like your ds is onboard too!

Maybe the new DO will have better luck getting info if she contacts last one.


We also need to see OT. I will be making that call Monday. Otherwise, VT going ok.

Keep us posted!

Congratulations, HappilyMom! It sounds like the new optometrist is putting you in touch with resources and helping prioritize therapies, and that you trust her and she works well with your son. Glad you sought a new specialist!

I would want to do a baseline study of his vision in the fall, immediately before starting the vision therapy, and then testing later to see how effective it was. Who knows if the data points may change as your son going through various other therapies first (and as he gets older).

Susan Barry's Fixing My Gaze is a book-length exploration of how she sees and how vision therapy changed her life. Her case was first highlighted by Oliver Sacks in an article in the New Yorker, and then she was "Stereo Sue" in his riveting book, The Mind's Eye. So if you want a shorter "homework assignment," you could check out Sack's article/chapter-length descriptions--so riveting you'll probably want to read Barry's book anyhow:) Oliver Sacks' work helped me believe this vision therapy could be effective.

Good luck unpeeling the onion.

Thank you! You all make me feel like I have my own cheerleaders in this.

It is so weird to suddenly become aware of how pervasive a handicap your child has.... to be talking deficit and delay with a kid that you have always been concerned with acceleration and advancement. I think it's going to take some time to wrap my head around all this. Slowly I am understanding all the things that had puzzled me before.

Portia the VT place is a mile from my house (school is a half mile) but that sounds like wise advice, I will start collecting my crock pot recipes...if there is still OT involved it may get pretty crazy. And yes the exercises do seem to be strength building. Thanks for helping me understand that better. It was a lot to take in with the new doc.

Laurel thanks for mentioning Oliver Sacks! A quick google showed me he is someone I'd like to read. And yes! This is what the new doc is planning... do a baseline in the Fall before school starts then plan from there.

...which brings me to another research project. How do you get the ball rolling for a 504 plan? I am going to post this elsewhere but I now have 2 ODs who have examined him and insist that he needs a 504 right away. Even more so as the school is experimenting with accelerating him in the Fall.

Melessa glad to hear your son's VT is going well. I should PM you the site for the therapy our doc recommended. There may be a similar program where you are.

I thought I would post here that the proprietary program that our new OD is recommending is the "Sensory Learning Program". There is a map of where it is offered here:

http://sensorylearning.com/locations.php

The new OD sounds great. That sounds almost word for word what our OD told us - do some OT first, then VT. My son has been to OT only 3 times and we are in the middle of moving so we haven't done much at home yet.

I'm curious about the 504 as well. I guess I will know more once he starts VT.