Eyes

We are done with eyedrops, yay!!

Daniel had his third post-op visit with his opthalmologist yesterday--which took most of the day because we had to make an hour and a half drive each way.  The doctor was extremely pleased with how Daniel's eye has healed.  He wants to see us again in the summer just to make sure that everything still looks good, and then I think we are free for a while!  :-)  In addition to looking at Daniel's eye and checking his pressure (which was 16, normal), both the doctor and the doctor's assistant spent a long time putting various corrective filters in front of Daniel's eyes and checking how they changed his vision.  The filter for astigmatism (which Daniel has) made him exclaim, "I can see clearly with this one!", but none of them allowed him to see the second line on the vision chart.  He can see the first line with just his plain eyes.  Meanwhile, his near vision (about ten inches, I think) has improved to 20/70 for his left eye (the one that had the cataract removed), 20/80 for his right eye, and a little better than that for both eyes together.  His distance vision is 20/200, which roughly means that he can seen from a distance of 20 feet what someone with 20/20 vision could see from a distance of 200 feet.  Talking about feet doesn't make much sense when you're looking at near distance, but his doctor said that with 20/70 vision he could read a newspaper without having to get his face right up in it.  (Daniel's very best visual discrimination is about 20/40, but he can only do that by holding something an inch or two from his eyes, not a good option when reading for long periods of time!  One of my "ah-ha" moments about how Daniel's eyes work was when he was showing me something and shoved it right up into my face so close that I couldn't even focus on it.  I realized that he wasn't being annoying or thoughtless, but trying to help me see, because that is the distance at which his eyes focus best!)  Given that Daniel is only just beginning phonics in English, it is going to be a long time before he needs the ability to read fine print.  So given that and the fact that different lenses don't change his functional distance vision at all, the doctor said Daniel could get along fine without glasses for now.  They might make what he sees look a little nicer, but they won't help him accomplish anything that he can't do without them.  Given how much Daniel hates glasses, and given what a nuisance and expense it would be to get him fitted for contacts, we're quite fine with the reprieve!  However, it does mean we need to get on him about wearing sunglasses to protect his eyes from UV radiation.  His attitude right now is that he's gone 14 years without wearing sunglasses and never noticed any ill effect, therefore sunglasses are pointless.  He feels the same way about sunscreen.  It's just hard, apparently, for a now-thinking child to feel the weight of future eye damage or skin cancer!  (And he told me the other day that he used to get sunburns all the time when he was little...AUGGGH!)  I personally put sunscreen on him in the mornings and he grudgingly tolerates it, but I had held off on pushing the sunglasses until he had a prescription for them, or better yet, for tinted contacts.  Now that he is not getting his vision corrected...I need to get on it!  Hopefully if we have him try on a gazillion pairs of sunglasses and find ones that are comfortable, that will help with the compliance.  Or if we can find non-corrective contacts with built-in UV protection (is there such a thing? anybody know?), that might be even better.  I'll also have to make sure that he not only gets permission to wear sunglasses at school (normally they're not allowed), but that his gym teacher knows to remind him to put them on when the class goes outside.  (And boy, am I going to be hearing about that from Daniel!  Ha.)

Meanwhile, Daniel has an IEP (Individualized Education Plan) to address his vision issues at school.  His vision issues are hardly the major factor affecting his education, but there is no formal process for addressing academic delays due to lack of education in one's home country, and we'll take any extra help we can get in any area!  And it is certainly a problem for learning that Daniel can't see the board at the front of the classroom even when he's sitting in the front row.  Right now he can't do most of what the other kids in class are doing anyway, but if he can at least see what they're doing it will help him absorb some of the language and concepts.  So his IEP is mostly geared towards getting him to use adaptive devices: a magnifier so he can read small things up close, a monocular (kind of like a miniature telescope) so he can make out words and images on the walls and whiteboard of the classroom, and a flipper (basically a closed circuit TV system) that will let him use a screen and camera to see whatever he points the video camera at, usually either a worksheet on his desk or the board at the front of the classroom.  The flipper is especially nice because he can "look" back and forth from something far to something near without having to change his focus.  Unfortunately, Daniel is about as fond of his adaptive devices as he is of sunglasses and sunscreen.  The magnifier and monocular go to school with him, but I think they mostly stay in his locker.  So getting him to realize that they are useful and to use them in class is the main goal for this school year.  Daniel's vision teacher recently instituted a requirement that he needs to bring his magnifier when she works with him, and he can get a detention if he doesn't.  So that will make sure it comes to his afternoon classes at least three times a week.  Then there is the flipper, which he is just using (or supposed to be using) in math class for now.  The first day he had it, he turned it on, and had lots of classmates asking him about it or craning their necks to see what he was doing.  That made him uncomfortable, so he didn't turn it on after that (but didn't bother to tell his vision teacher or me that he wasn't using it).  So today his vision teacher is coming into class with him to explain to his classmates what the flipper is and isn't, and to have Daniel show them how it works.  Hopefully that will satisfy enough curiosity that he can use it in peace.  And I am going to give him some assignments that require him to use it, to hopefully get him in the habit.  Part of the problem with him using his adaptive devices right now is that he's not doing much in his regular classrooms--certainly not doing what the other kids are doing--so he doesn't have assignments that can only be completed with help from his adaptive devices.  And under the circumstances, really, I can see why he doesn't want to bother with toting around a bunch of tools that have to be kept track of and make him look different.  Hopefully that will change, in time.

We have another IEP meeting on Tuesday (Valentine's Day!).  This was sparked by Daniel's decision to walk home from school by himself one warm afternoon.  He did walk by himself some in China, and he is aware of cars.  But in order to get from school to home he has to cross a busy street twice, and later walk down several blocks with no sidewalk (although at least that part is a quiet residential area).  So any time he has broached the idea of walking alone, I've told him no, it's not safe.  But one day last week he showed up a little before the bus would have dropped him off, mighty pleased with himself for walking.  He was shocked--shocked!--that I was displeased with him for doing something I had specifically and repeatedly forbidden him to do.  He insisted that he was safe, he knew the way, he had watched how the other kids crossed the street and copied them, and didn't I know that he was just like everyone else?  (Poor Daniel!  It is hard to have your choices more limited than other people's.)  To make a long story short, I called his vision teacher to get her opinion on the safety or lack thereof of him walking independently, which resulted in him getting a terrific scolding from her (and getting very annoyed with me for having told on him!), but also resulted in her recommending that he receive services from an orientation and mobility specialist who will pull him out of class to walk him through his route home and teach him how to safely approach each type of situation he may encounter.  I knew that orientation and mobility specialists existed, but I had no idea that they could do something like this, and I am thrilled!  The way Daniel's bus schedule works now, he spends about half an hour before school and half an hour after school sitting in the bus waiting room with a bunch of bored peers who are also waiting for buses.  He liked the novelty of being with new friends for the first few weeks, but he's had some encounters with mean or thoughtless behavior since then, and he does not like it there anymore.  And I would so much rather have him out getting exercise by walking home than sitting in a room dealing with boredom and middle school social dynamics.  We have already made one improvement in Daniel's bus experience, which I wish I had thought of a long time ago.  His designated stop is across a fairly major road from the end of our street, and I was not comfortable with him crossing that road by himself, so I walked him down to the bus stop every day for months.  However, the bus actually turns around a couple of blocks down from his stop and comes back on the other side of the street.  So it is just as easy for the driver to pick Daniel up on our side of the street, especially since he is the only student who gets on at his stop.  And all it took was a quick call to the bus coordinator to get permission to move the stop from one side of the street to the other.  So now I can send Daniel out by himself in the mornings without worrying about him getting run over on his way to the bus stop.  He rather likes the independence, and I rather like not having to get myself and Esther all bundled up on cold winter mornings.

And, in closing, can I just mention how much I love Daniel's vision teacher?  She has been involved in his education since about the second day of school, unofficially at first when we didn't yet have an IEP.  When the IEP was written she was initially going to pull Daniel out once a week for instruction in using his adaptive devices.  But when she found out about his academic delay, and how much he needs one-on-one instruction that he really isn't getting now, she figured out a way to change that to three times a week.  So while she is ostensibly working with him on vision issues, they are using those specialized vision devices and techniques to get in some much-needed tutoring in academic areas!  Oh, I love that woman!  Besides that, she is extremely skilled at her job.  She knows how to teach visually-impaired students in ways that fit with how they process information, and she knows how the academic system works and how to leverage it for her students' benefit.  We are so, so blessed to have her on Daniel's team!