Severe Convergence Insufficiency, & the organizations that are supposed to help

@nonew3 (1941)
United States
August 24, 2011 9:04am CST
If you are an adult with severe Convergence Insufficiency (CI), the medical doctors and the disability-services organizations can't handle you. That has been my many-years experience with the local disability-services organizations, the medical doctors I have gone to, and even the emergency department at the local hospital when I kept presenting there with very severe vertigo and very severe headaches due to this CI, combined with my other disabilities. I have gone into some of the details of this in my other posts at myLot, especially regarding my issues with the local department of services for the blind. Well, I also have auditory-processing problems, and the local hearing-loss/deafness center has done a horrible job of dealing with my CI as well, as all of their suggestions and recommendations have backfired due to them setting off the double vision, vertigo, eye pain, headaches, etc., of the CI, which can cause me to fall hard to the ground if the vertigo gets severe enough. Well, now there is a lot of animosity between me and the head of that deafness organization because of how this went on and on for many years. I'm sorry, but I can't help that I have this condition and that it took so many years to finally get the symptoms more controlled. I can't help that so many people dropped the ball in how to properly deal with me having this condition. I can't help that I kept crying out for help, and the only "help" I got was grossly inadequate, very wrong, and kept making the symptoms worse! How dare he blame me for this history and these problems! I also can't help that I have had to provide my own disability services that the deafness center and the blindness center would not provide (such as teaching myself how to use a cane for the blind after getting some limited voluntary instruction in this from a local blind woman), and had to go to Hadley School for the Blind to learn Braille by correspondence because the local Department of Services for the Blind refused to do that for various reasons. Yep, I am learning both Braille and ASL, not with any help at all from the local disability services. And, once my vision therapy is completed, I'll just keep right on learning them. Before anyone knows it, I'll be fluent in both. (I have taught myself ASL for many years in spite of the fact that looking at moving ASL kept triggering my most severe vertigo symptoms. More on this later.) The medical doctors have not heard of CI, and whenever I have gone to medical doctors and explained to them what CI is, they have had no idea how to treat its symptoms. I have had to have them call my vision therapist during office hours. This has had to happen every single time I have gone to a medical doctor, even my neurologist for my migraines, since I started vision therapy in June of 2011. Before I started vision therapy, I had no vision therapist for them to call. I finish vision therapy in about 8 weeks, if all goes according to plan. I have been banned from businesses, fired from work, kicked out of programs, lost friendships and relationships, had my finances drained, had my college grades plummeted from A's to D's and F's because of my CI interfering with my ability to do my homework and read the textbooks, and all sorts of other unfortunate events have happened, all because of this CI. I hope to help bring an end to at least some of the pain, suffering, and difficulties of those adults who are unfortunate enough to have severe CI, so that they can hopefully go through vision therapy (which takes months to complete) without getting a lot of hassles for having this. It's not the person's fault for having CI, and there desperately needs to be more education in how to deal with it.
1 response
@JosephP (1118)
• Jamaica
13 Sep 11
It is very unfortunate indeed.
@nonew3 (1941)
• United States
14 Sep 11
Very. But, I will be writing letters of complaint to all of the places that kept messing up and kept refusing and postponing appropriate services, including that deafness center. I have just a few more sessions of vision therapy left, thankfully. I'll able to do a lot more to tackle all of this head-on once my vision therapy is over.