As you know, my son David is at a residential facility a few hours from here. He has similar issues as Pearlsky, the same basic disorder.
Both kids have vision problems, and this makes sense since their amino acid deficiency has an effect on the development of the myelin sheath, the important covering of nerve fibers. Their optic nerves that travel from their eyes to their brain, the conduit for images if you will, is not as healthy and robust as they should be, hence there are image processing issues in the brain. We know this from tests such as the Visual Evoked Potential (VEP). David also has optical issues (eye shape, lens, etc. as opposed to neurological issues mentioned) and wears glasses, Pearlsky does not have the optical issues, hence glasses will not help.
This email came in from the residential facility today:
I am writing to inform you that unfortunately, our vision specialist resigned this month due to family issues. This happened suddenly and was unexpected, but our HR department is working to find a replacement ASAP.
I just received a report from her from a visit with an optometrist which I will forward along to you. The only note on the report that I’m able to discern reads “eyeglasses may assist in near vision, but not mandatory.” [emphasis in original report]
Losing the specialist is unfortunate, as she was very good and had only just begun to work with David. However, I spoke with our principal and Human Resources director, and they are committed to finding a replacement ASAP. We will contact you as soon as we find a new vision teacher.
Please let me know if you have any questions.
I have asked to see the report as quickly as possible. I have many questions …
He claims that eyeglasses “may” assist David’s near vision. I want to know what tests he did that made him determine this. And what is with “not mandatory”? Isn’t that true with every medical procedure? Even resuscitation is not mandatory. If we want his vision as good as possible, then we try whatever has any chance of working, right? So if there is a 75% chance that glasses will assist his near vision, don’t we use them? Then the question is at what percent chance do we not? If there is a 10% chance that glasses will assist his near vision, don’t we use them? As for “mandatory,” glasses are only “mandatory” if we say we want everything done that may enhance his vision. Hence, in my view, the glasses are mandatory. Who is he to say they are not?
I await the full report.