iDisabledSon
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:
Hello,
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.
Thank you,
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.
Okay, I cannot, for some reason comment on the previous post, but I guess the pay-off is that I get to be first on this one.
For the previous post I will just say – I am with Claire on every one of her comments.
By ‘vision specialist’ do you mean – teacher for the visually impaired? If not, I need to learn what ‘vision specialist’ is. An optometrist – that I know and the one who wrote that report has no idea what is about to hit him.
Hoping the residential home is able to replace she who was ‘very good’ soon.
Dad, do your kids have a genetic condition? I believe you mentioned something about this way back when, but I can’t remember.
Also, why is your son in a residential facility while your daughter is not?
I would be concerned with “the only note on the report that I’m able to discern.” Is that because it is written in medical language that’s incomprehensible to non-optical types, or because it is scribbled and illegible?
Nice notes Captain Vagueness, what does near even mean for that matter? I wear reading glasses, but they help a lot more with driving and reading freeway exit signs than they do for the close reading they’re intended for. I also wear glasses most all the time, not because I have to, but because I think being able to see in focus is awesome.
Mighn’t it also be valuable for David to wear glasses all the time so his eyes and brain don’t have to work at assimilating what he sees with glasses to what he sees without?
PT: The easiest way to answer your questions is with links to past posts … on their condition, you can read about their extremely rare diagnosis here and information on David is here in the first of a couple of posts. As for why Pearlsky is not in a residential facility … simply, there is no reason for her to be.
I get what you are saying, and it is inexcusable if the vision specialist is indicating that glasses are not mandatory due to David’s neurological conidition. Appalling.
The only thing I can see that may make sense is if the “near vision” is referring to reading glasses. Your son may have different vision needs for close items vs for distance vision. In cases like that, bifocals or two sets of glasses may be indicated for optimal vision for two different scenarios.
Due to my age, I am coming to that point right now. I need corrective lenses because I am very nearsighted. I am beginning to have problems with reading. I recently made the decision to sacrifice some acuity in distance vision so that I can go a little longer without reading glasses. Reading glasses are not yet “mandatory” for me, as I can still read and see small things within what I feel is acceptable, though not as readily as I used to be able to see, and it certainly is not optimal. In time, I’ll need those reading glasses or bifocals, but for now I’ll sacrifice some of my distance acuity so that I can put that off.
In David’s case, if he is having problems in near vision range, a decision would have to be made as to whether he should get a second set of glasses, and guidelines as to when his caretaker should switch glasses, since bifocals may not work for him. I don’t want bifocals for a number of reasons and will likely have two sets of glasses (or reading glasses to go with my contact lenses) when my near vision worsens. If David’s near vision is such that he is losing out on things that require close work, those second set of glasses become mandatory. If not, then he may not yet need that second set of glasses.
By the way, some parents I knew whose children cannot read found out late that their kids were not checked for near vision because it was considered a non issue for them. If David or Pearlsky do any kind of close work type activity, reading glasses might be something that can enhance their vision for that. The child’s caretaker is the one who would have to determine when the glasses should be switched between close work and regular distance needs which is another thing that has to be done.