Edumacation

Tanner started losing his sight at the end of last school year. Not wanting to believe it was anything more serious than some inflammation or something, I told his school that he was having "eye problems." How naive I was! I had hope that his problems were a transitory thing, and that he would be back to normal by the time school started in August.

When it became apparent that this was not going to happen, I began calling and emailing anybody that I could think of to let them know that a blind kid was going to be in class in the fall, and what were they going to do about it?

I got no response. Because the counselors didn't get back to school until the beginning of August, there was no one I could tell. I also kept calling the Division of Blind Services, wondering what it was, exactly, that I was supposed to be doing.

The Division of Blind Services was slow to call me back. They sent me paperwork which I filled out and sent back, but when I called back to inquire about said paperwork, they said they never received it and I would need to re-send. Sigh.

When I finally met with one of the counselors before school, she took one look at Tanner's course load - he's a smart one, that boy - and she asked if Tanner was going to consider a less rigorous load. He immediately said, "No."

So I thought the school had things well in hand. Bwahahahaha! Tanner spent the first nine weeks without any of the tools necessary for him to learn. His AP Geometry teacher called me one evening, concerned because Tanner came to class and put his head down the whole time. There was nothing else for him to do. The teacher spent most of the class drawing angles on the board, asking the class to comment on the work. Tanner could not see. How was he supposed to comment?

I realized recently that this is a small glimpse of the "disabled" world. Tanner does not want things handed to him on a silver platter; he wants to learn just like any other student. Some of his teachers are gifted - they may not have had a visually impaired student before, but they knew he would have to be taught auditorily. Bless them.

Somewhere along the way, we heard about the Florida School for the Deaf and the Blind in St. Augustine. This wonderful school gets its own post. (to be continued)

Back to Reality

We came home from the Florida Keys rested, dejected. I had been in a  fog since May 24 - will I ever forget that day? Not likely.

After the Dr. Sedwick debacle, we searched for another pediatric neuro-ophth while awaiting the results from the genetic testing lab. I was apparently doing things wrong; the way to get an appointment with a specialist is to get the OK from insurance and then make the appointment.

When we finally saw Dr. Auerbach in mid-July, Tanner was now legally blind. I was hoping that he would have an answer other than Leber's Hereditary Optic Neuropathy, although all the literature I had read up until then was pointing in that direction. Dr. Auerbach wasn't convinced that it was LHON, and wanted to run some blood tests. Finally! A physician who was doing something tangible.

It wasn't all good news, however. I asked Dr. Auerbach if he could release Tanner for sports, which is all he really cared about. "Are you kidding? He would get his ass kicked!"  I replied, "Then let him! This is all he wants to do, and he needs a release from a physician."

I did not win. Tanner did not get the release. In the middle of all of this, however, I contacted a very caring person involved with our insurance company. I explained to her that I was not satisfied with the doctors here, and I wanted to take Tanner to Bascom Palmer Eye Institute, affiliated with the University of Miami. She expedited the paperwork, and we took Tanner to Bascom Palmer in August.

Bascom Palmer is amazing. It really makes you realize what a podunk you live in when you go somewhere like that. Everyone from registration to the technicians were great. And right away, Tanner received a conclusive diagnosis of LHON.  We met Dr. John Guy, a crazy smart doc who is working under a $6 million grant from NIH on a specific mutation of LHON. He pulled out his Iphone and showed us images of the optic nerves of the lab animals that he has been testing. Super geek, but I was awed. I have been in the presence of many intelligent people in my life, but this man is Nobel Prize-worthy smart.

I cried when I finally got a diagnosis for my son. There is no cure or treatment for the disease, but it is also not life-threatening. But how his life had changed in two short months. Tanner took it all in stride, and was happy that Dr. Guy wrote him a release: "Cleared for all physical activity, except motor-vehicle driving."   He's funny, that Dr. Guy.

Time for a Break!

After Tanner's rotten neuro-ophth refused to do 15 minutes of paperwork for him to get the genetic testing, we kicked them to the curb. After some thought, we asked Tanner's primary to do the testing for us, and of course he agreed. God Bless Dr. Rosales and Lisa.

The testing would take eight to ten weeks. We had nothing but time, so where better to spend it than in the beautiful Florida Keys! Sure, we have money problems, but we got a great deal on a hotel, and I figured that if Tanner were going completely blind, I wanted him to have memories.

The best part about the Keys is Bahia Honda, a state park with sugary sandy beaches, and warm, gentle surf that beckons you to spend the day. We found a live conch, but of course had to put it back because they are protected.

It was when we were in the Keys that I realized how much Tanner's vision had failed. He couldn't read menus, see his food, or even read his text messages. He could reply to the texts, because he had his keyboard memorized, but it was just very sad watching him. It was sad for me, because I saw the death of all the hopes and dreams I had for my son - Tanner wanted to join the service or be a police officer, or join the FBI. I didn't have the heart to tell him how difficult it was going to be to do any of those things.

Tanner was also deprived of his greatest joy, playing sports. His wrestling coach would not allow him to even practice with the team, lest something jiggle whatever was making him go blind. At this point, we still did not have a diagnosis. Tanner told me that he did not want me mentioning his blindness during our trip to the Keys - I was so bad; every day, I would put Tanner through my own informal "tests." Can you see this? Can you read that? I asked him several times a day, trying to figure out what he could see. Bless Tanner, he never lost his patience with me.

I did cry on the Fourth of July. We had made arrangements to be at a big beachside hotel to view the fireworks. Our family took position on the pier, where the show was spectacular. You could almost reach out and touch the fiery display. Everybody clapped at the end, out of sheer joy for the lights, the noise, the smell of gunpowder.

Why are they clapping for fireworks? I asked myself. Don't they know my son is going blind? An irrational, angry thought, but I couldn't help myself.