Blog-a-thon Day 24

Kyle got glasses. Everyone has been wanting to know how I knew he needed glasses and how they tested his vision. Honestly, it had not occurred to me that Kyle might need glasses. I also assumed he was untestable. How would you test someone who can't communicate what they are seeing or not seeing?

While everything else has been on our radar, Kyle's vision fell completely off.

A few years ago, we noticed Kyle's right eye began dramatically rolling upwards while the left eye drifted outwards. This would happen for a few seconds at a time and then the eyes would go back to normal. If I waved my hand in front of his eyes, the eyes would go back to normal. I wondered about a petit seizure. When he went through a thorough neurological work up and had to wear a 24 hr EEG, seizures were ruled out. Good.

A few weeks ago, his occupational therapist mentioned that while tracking to the right, his eyes drifted in different directions. She referred me to an optometrist who is very knowledgable about autism and works with people with special needs. Her office provides vision therapy as well as the typical eye testing.

Dr. DiSimone was absolutely wonderful with Kyle (and me too). She was extremely patient and I could tell by her questions, comments, and observations, she really understands autism. That was a big relief and also made a tremendous difference. You know when someone gets it and someone doesn't. And she got it.

The bottom line was she noticed Kyle's eyes were all over the place. They often do not work together vertically OR horizontally. The vertical part is most likely causing him to have double vision! Not necessarily all the time, but most likely when his eyes drift. So Kyle has been living with intermittent double vision for ???- maybe most of his life! Yikes!

The good news is, prism lenses can correct the double vision if, and especially, when, the eye drifts. Her testing was based on observation of how Kyle uses his eyes. He was able to wear the glasses with the lenses that are taken in and out so she could see his response to a variety of lens changes. I'm not exactly sure how she came upon the correction he needed. She said she could not be exact but she was going to make things bigger and brighter for him in addition to the prism lenses.

Would he wear the glasses? I didn't know. This would be a huge change for Kyle. How would he react when suddenly his world looked different? Would it be uncomfortable? Would he be so glad to be seeing well, he would never want to take them off? Would there be a whole new level of visual input for his brain to process? Was his brain up for the task? What would the adjustment period be? And on and on. The questions were endless.

Rejoice

When I first put the glasses on Kyle, he wore them all evening until bedtime without attempting to take them off. He seemed to be looking at his world differently. Maybe he was seeing or noticing some things for the first time. He did not seem to have any trouble navigating around the house and we even went for a walk in the dark. Nothing was an issue for him.

I was pleasantly surprised. Thrilled actually. I envisioned having to work with him on wearing them for just a few minutes at a time throughout the day. I had not even asked the doctor if he was supposed to wear them all the time. That question did not occur to me because I thought we were a long way from being concerned about that.

For the next two days, Kyle did really well with wearing his glasses. He took them off just a few times during the day. We assumed his eyes and brain needed to rest so we allowed him a break.

We were all really excited, believing a whole new world with lots of new possibilities were about to open up for Kyle. His eyes appeared to be working together. He was much more visually focused. Move over auditory, here comes the visual. This could be huge!

Regret

Sometimes it's really hard not to "should have" yourself. I should have taken him to have his eyes checked sooner. How did this fall through the cracks? Why hadn't any of the doctors recommended it? Especially when we took him for the neuro work up at Mayo and I mentioned my concern about his eyes.

Though I was excited about the discoveries about his eyes, I felt like I had slipped up on my job by neglecting to have them checked. Twenty eight years is a long time to let something slip by. It wasn't even on my radar. My husband and I don't wear glasses. But our daughters do. Hmmm.

Though I didn't dwell on this for too long, it did penetrate my awareness. I am not one to beat myself up, but I am human and do carry some regret and guilt.

The Iguana Pit

After the first two days of Kyle wearing his glasses, things changed. We were at the Zoowalk for Autism early in the morning. Kyle wore the glasses for awhile and then decided to take them off. I wonder if things were overwhelming to him and the glasses were just too much given everything else that was going on. He wore them on and off during the walk. It was obvious he was having a little trouble with depth perception in certain situations. Was he just adjusting to the new vision or did the glasses need to be adjusted for him? Hard to know. We just had to follow his lead when he needed to take them off.

Kyle wanted to climb up on the step next to the iguana pit. It was not going to work with the glasses so he decided to toss them into the pit. Fortunately, Neil was right there to intercept. Phew! That was probably the first of many heroic "save the glasses" rescues.

This was the beginning of Kyle's realization that he did not have to wear the glasses and could take them off whenever. Since that time, he takes them off throughout his day. There are certain times of the day he is more likely to wear them and during certain activities. I'm still wondering if they are adversely affecting his depth perception or is it just a matter of getting used to them? Did he have headaches in the beginning? Is it hard to transition back and forth between the glasses? Again, lots of questions.

On the phone yesterday, the doctor told me to follow his lead. That's what we have been doing instinctively. Next week, we will go in to see her and reevaluate. They may need to be adjusted.

I am grateful that Kyle is as open to wearing his glasses as much as he has been. And sometimes he takes them off very gracefully and sets them down really nicely. Other times, they have hit the deck. People are afraid they will get lost or broken on their watch so everyone has been very diligent.

I'm happy to have found something that can potentially help Kyle live better. I do have some regrets but realize I can only move forward from here. Learning isn't much fun if you regret the things you didn't see or know before. We can only do the best we can given the available knowledge, awareness and resources.

Fortunately, Kyle did not try to toss his glasses into the lion's den. I think Neil might have climbed in with the iguanas to rescue the glasses. But with the lions? Don't think so.