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.
