Beastie went to see Dr. Aristimuno again yesterday. Overall she is happy with the improvements we see with the glasses compared to without them. She says that the cupless optic disc is probably a birth defect and there isn't anything different we should be doing. We will probably never know if it impacts his vision, but it's just his version of "normal". The MRI shows no swelling or tumor in the brain that could be causing the optic nerve bundle to be so compacted, so there isn't really anything else to do for it. We discussed his lack of peripheral vision & again, there probably isn't anything we can do about it and it is probably another thing he was just born with, or without as the case may be. We also talked about vision therapy and I got her views on it, more to have a more informed answer. She doubts that it will help Beastie, given the fact that he already gets so much "table time" work that forces him to work with his eyes. She is unsure about his resistance to crossing mid-line, although she reports that she has heard that before with kids with autism.
We go back again the first week of June for another complete exam. Until then we just keep doing what we are doing but let her know if he seems to have any changes or difficulty seeing even with his glasses because it could mean that he is having a degradation in vision.
It is SO freakin' frustrating that he can't tell us what he experiences, what he sees, what the world looks like to him & if the glasses are helping. I mean isn't it bad enough that he has autism, sensory processing issues, tummy issues, etc, etc? Do we have to have vision complications too? I'm not one who usually stomps my feet & says, "that's not fair!" but just for the moment I feel I might be entitled to a little whining. That I get to yell, "Hey God, enough already!"
But whining doesn't help & it sure as hell doesn't fix things or move us forward. So, time to suck it up and deal with it, right? It could be worse, he could be blind or need surgery or have a brain tumor or whatever. I just have to keep reminding myself, it could always be worse.
On a happier note, Autism York has a new blog! Check it out, subscribe if you're interested & please feel free to give me feedback.
I leave tomorrow morning for Stitches East. I'll be there Friday & Saturday, working at the Uncommon Threads booth. If your there, be sure to stop by and say HI!!!
1 comment:
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