A Blind and Autistic Adventure

A Blind and Autistic Adventure

                   After three days of trying to call my dad's cell phone, I finally reached him.

"Why didn't you call me back? Aren't you coming to visit Green Bay this weekend?" I asked him.

Then, he explained what was going on, and I repeated the news to my friend April, while I fought my tears.


         "Oh no!" I exclaimed.
April quickly shot me a concerned glance.
         "My sister Maria just went blind!" I told her.

         "It's bad enough she already can barely talk, and has to use sign language, and she is autistic. Now, my dad says she might have to use Braille." I told her.

         April said she would keep my sister in her prayers.

         A little over a week later, I was back at my dad's house where I currently live with Maria, and her twin sister Sarah, who is also autistic, and my Dad. A of of unanswered uncertainties were floating in the air. I was wondering if the blindness was related to the autism or not, and my dad was wondering how long ago did the eye problems start. No one was sure. It was like a crime without a crime scene, where all substantial evidence had been virtually wiped out, or very cleverly hidden, for no one to completley recover.

         My dad and the in home teachers who help my sisters were discussing the situation.

         "One eye went out first, and then the other," My dad concluded, after talking to the doctors. It was no wonder she could operate on one eye for so long. However, some of her behaviors were a mystery.

         For example, was Maria's blindness the reason she starting poking her eyes, or banging her head for well over a year, or was the fact that she was poking and banging so much the cause of the blindness? This was a new twist, because for a long time, this unusual "poking and banging" behavior was thought to be, even by medical experts, another symptom of autism. Autistic children sometimes have that tendency to act out in ways that children without autism would not.

         Only one person, who was not a registered nurse or doctor, that worked at the Marshfield hospital where my dad often went for check-ups, had any inclination that she even had an eye problem. My dad did not know what was up when she mentioned to the nurse that there is "other implications here."

         She didn't want to say what exactly in front of my dad, but she new "something was up."
My dad was upset, and wondered what the big secret was. He was wondering if the lady was trying to make some kind of false accusation against him, or simply what was wrong with Maria. So he called somebody who knows the person at the hospital who made the "other implications" comment, who is also directly involved with my sisters, and it turns out that this person knew through past personal experience that Maria's eyes had gone out.

         After my dad found this out, he confronted her upon his next visit to Marshfield.

         "Why didn't you just tell me directly?" My dad asked.

         "Unfortunately by law I cannot give out any 'Medical Advice'," she explained. My dad did understand her dilemma, but still thought she should have just told him directly, but at least now he knows it is something that can be changed. That same day, the doctor did some tests to confirm what the diagnosis of her eye problem exactly was, and how it was going to be taken care of.

         No one for a long time would have even guessed that cataracts-which is what the eye impairment turned out to be-could be another reason for Maria acting out the way she did.

         After the shock of her not having her eyesight wore off, my dad, myself, and the teachers have actually noticed some positive changes in Maria. For one, I was upstairs in my living space above me dad's house, and Maria decided to climb up the stairs to me. This is something she has not done since I first moved in about two months prior.

         I usually had to coax her to come up, unlike her sister Sarah who would take the initiative to do so. She also reached out more, and used her hands, and ears, to hear and feel more. Believe it or not, she was actually making more progress in that time being having no sight, that she did when she could see. Therefore, even though my dad and I, and other people, were relieved that cataracts were reversible, and that it was possible for her to regain her sight, we actually saw the benefits of this time she was going through.

"          Maybe we should leave her like that," I said, only half serious. Of course I would want my sister to see again, but it was nice to see her reaching out more, as much as Sarah was. My dad agreed with me, because he noticed the change, also, and he reported the change to the teachers.

         He also said,"That's why I have told the doctors not to rush the operation, because this is turning out to be good for her."
         I was our way of looking at this as a "good thing" that happened to Maria, which was our way to deal with the fact that she lost the ability to see in the first place. We still went through the process of doing what we had to do, though.

         "Would you like to come with me to Marshfield?" My dad asked. I decided to go with him. I helped hold down my sister as the doctor there checked her eyes again. She squirmed when the doctor put the light to her eyes, but she did not follow the light with her eyes when the doctor passed the light back and forth in front of her.

         "It's definitely cataracts," the doctor confirmed, "and her retinas appear to be fine. I can remove the lenses, but I am reluctant to replace them on kids."

         "Why?" My dad asked.
He went on to explain that it was more successful to replace them on adults.

         Later my dad discussed it with some of Maria's home teachers.

         "It doesn't seem to make sense," my dad said to the teachers,'They should be able to do it. Why take out the lenses, if her eyes are just going to be blurry, but not replace them?"
I was thinking about it to, and I agreed. Sure, it might be more risky on children under ten years old (Maria is 8), but what would be the point of having them removed, if she would still not be able to see clearly? She could possibly wear glasses, but would she even keep them on?

         After some research and consideration, my dad decided to call a Minneapolis Hospital.
"Guess what? They will for sure do it there, and you know what else? It turns out they don't even normally do implants at Marsh field."

"          No wonder he seemed reluctant to do it!" I said. " I wonder why the Marsh field doctor didn't just say that!"

         "I know!" My dad said.
         It was confusing, but all that matters now, is we found someone who would do the lens implants.

         On the day of the operation, I decided to ride with my dad to the University of Minnesota Hospital-Fair view.

         During the drive, we were on pins and needles. One of the teachers came with us, and was sitting by Maria, asking my dad every two seconds if she should do this or that for Maria, and my dad was trying to find highway signs, so he makes sure to travel the right way. I sat in the front seat intensely immersed in my crossword puzzles to keep my mind off Maria's upcoming operation. Even though there was a seventy-five percent chance of this eye operation working out, we still had "what if it doesn't" echoing in our minds.

         When we arrived in Minneapolis, we ate, and decided to stop at Wall-Mart for a few minutes. I was doing whatever I could to try to get out of the low mood I was in. I wanted my sister to be okay. My dad seemed didn't say much during dinner, and appeared to be handling this situation, as if it were everyday life. It was probably because he just wanted to get it over with, I imagine.

         While. I was at Wal-mart, I decided to peek at a Bible, and ran across the verse about Jesus healing a blind man. I starting thinking that if Jesus could do that without doctors, then surely Jesus must be able to heal people with the help of a technologically advanced university medical staff. I told my dad about that Scripture. That put our mind at ease a little bit.

         A little while later, we were at the hotel. My dad keep complaining about the noise in the hotel. I wondered if the fact that he couldn't sleep was not because of that, but because of Maria's operation. I didn't question it though. At one point in the night, after my dad got back from his walk, I decided to step out for awhile. I decided I needed to be around people. Even though I believe in God a lot, my nerves were fried, and couldn't help but to want to get out and have a couple of beers. I had two, and I temporarily felt relaxed, and came back to my room, feeling as if the world were perfect.

         I though My dad awoke when I came in.
"Sorry I woke you," I said. I told him I even went and got an extra key so I wouldn't. Turns out he had left the door open anyway.

         "I wasn't asleep," he said, "the damn noise in this place is keeping me up."

         That's all I remember, then it was morning, and we were off to the hospital. While we were there, being there, waiting for the operation to be done was like a suspense movie that was never going to end. The operation was only an hour and a half, but there was check-ups and other procedures, and some delays with other patients. So we were there most of the day.

         By late afternoon I was so tired I decided to take a nap on some chairs right in the outpatient surgery waiting room. My dad paced in an out of the waiting room, and sat for long periods of time in the hallway, anticipating the conclusion of the operating procedure. Shortly before it was over with, we just wanted it to end.

         Afterwards, I found out we wouldn't even know until the next day.

         "The next day?!" I exclaimed, "after all that we have to wait for the results until tomorrow morning!"

         "I told you her eye would be checked tomorrow," my dad said, frustrated.

         "Yeah, I said, "but I thought that was just to make sure everything was still okay. I didn't know it was to make sure she could see!"

         I was so unnerved by this time I decided to buy some stress vitamins at the pharmacy in the first floor lobby. I thought to myself that taking a vitamins would be better than drinking beer a second night in a row.

         The next morning, we went back to the doctors office to see how she could see out of the new implant. I waited in the car, because my dad parked in the patient pick-up zone. He was only going to be a few minutes anyway.

         "Could she see?" I asked, as soon as my dad returned with Maria. I sighed with relief when he answered yes.

         "Great!" I said with excitement." Maria can see!"

         I asked my dad to describe the tests that Maria went through so my dad knew she could see.
He told me the whole story. One of the objects that the doctor placed in front of her was a round, spinning Multi-colored light. She reacted, and reacted toward the lighted object in a way that let the doctor and my dad know she recognized it.

         "Great!" My dad said.

         "She seems to be responding well," The doctor commented. Next the doctor performed object tests.

         "Pick the fish," the doctor directed. Maria pointed to the fish.

         "Good job, Maria!" My dad said.
"Pick the frog," the doctor said again. Then ,

         Maria pointed to the frog.

         For the next few minutes, my dad, and the doctor repeated this procedure over and over, asking her to identify other objects such as the dinosaur, tiger, and other bright colors. The new lens began to function just as it should, and it was clear that she could see.

         She had to keep a see-through metal "patch" over the eye while it heals, and we were told to make sure she does not remove it.

         "Before you leave, Joe," the doctor told my dad, "be sure not to overwork her eye. It would be good for her to only be engaged in minimal activity, so that her eye slowly develops its strength on its own."

         It turns out she would have to be out of school for a month, and only take part in a very light learning activities, and nothing that would strain her eye too much. She also wore braces on her arms that the doctors gave her, to make sure she wouldn't continue to poke her eyes.

         My dad thanked the doctor, and was very happy with the result of the first eye.

         With confidence he returned two weeks later to repeat the same surgery. We do not yet know what the long term outcome of either operation would be, but at least Maria can soon begin to return to her normal learning routine, as a special education student at the school, as long as she can see. She will also begin once again to take part in the reading exercises that the in home staff does with her on a daily basis after school.

         Her life, other than the autism, will be back to "normal", as normal as can get-whatever normal is. I hope the best for her, and that my dad continues to have the strength he needs, to take care of both she and her twin sister, Sarah. On the other hand, after what my dad has gone through to work to get Maria's sight restored, dealing with the autism may now seem like a day off in the park on a sunny day.

         Who knows, it's one day at a time with Maria, and Sarah, but my dad, myself, and all the people in their lives who help her love her very much. We know that both of them have a bright future in store for them. Thank God for good doctors.