Friday, June 10, 2011

P's Vison Issues

It's been a while since I have done an update on P and his vision issues, and Kelly's Korner is hosting a Show Us Your Life about special needs today, so I thought this was a good time. Honestly, his Exotropia diagnosis just floored me, and the subsequent surgery and therapy have been all-consuming.

P turned 7 years old in August 2010 and started 1st grade. We knew when school started last fall that his reading skills weren't quite up to par with his peers. But since we were dealing with some Sensory Processing Disorder issues like his sister also had, we weren't too concerned. We figured that as his SPD issues improved, his ability to sit still in class and concentrate and learn would improve too. Testing after school started actually showed him to be at the level they expected for entering 1st grade. However, at home he still continued to have difficulty with reading, getting frustrated and often saying "I just can't!". So we took a pretty laid-back approach and didn't push him, and I most just read to him, rather than have him try to read to me.

After the holidays, I found out that he had been put in a remedial reading group at school. I was surprised, because he is so bright and to think that he had learning disabilities was just so unexpected.

I first thought we needed to rule out vision problems. Both Mr. Sasha and I started wearing glasses as kids, and even though P had a perfect eye exam report before K, I figured it wouldn't hurt to have another exam and see if there had been a change.

They gave us our diagnosis within a few minutes of seeing him- Exotropia. Basically, the muscles in his eyes were causing his eyes to turn out, and he was having to work extra hard to try to keep them focused. The condition had evidently been there for quite a while, and up until trying to learn to read, he was pretty good at keeping his eyes focused together. But because reading was a stress on his eyes, they would get tired and he was losing the ability to bring them together himself. And he had lost his binocular vision, which is the ability to use the eyes together.... so when he could focus, he was seeing double. No wonder he couldn't read!

The pediatric opthamologist said his case was severe enough to schedule surgery the next week. The suggest surgery when the measurement is over 10-12, and his was a 20. (I wish I remember exactly what those measurements meant, but I have so much info swimming in my head these days....)

During the surgery, a muscle on the side of each eyes was cut and moved to the correct location. The doctor said the surgery went well and he'd see us back in six weeks. So we left thinking that in 6 weeks, P's eyes would be able to work together and our problems would be solved.

FF 6 weeks, and sadly, he just wasn't where we thought he'd be. Cosmetically, his eyes were lined up correctly. However, his brain hadn't quite figured that out and he was still seeing double and didn't have any depth perception. The doctor said sometimes it takes the brain longer to figure out how to use the eyes correctly. I had read a bit on vision therapy and the doctor said he didn't recommend it because in his experience the brain would figure it out on it's own and he's see us at the 6 month post-op mark.

This is where my momma-bear tendencies kicked in. 6 months? We couldn't wait 6 more months!

Thank goodness for the Internet and Facebook! I posted about our struggles on Facebook, and a friend who has experience in things like this put me in contact with an out-of-state OT who was nice enough to discuss our case over the phone and recommended strongly that we find a vision therapist. My friend also referred me to a special needs teacher who does reading tutoring using the Lindamood-Bell method.

So we've been doing vision therapy (one hour long in-office session a week, with daily eyes exercises at home) and the hour-long reading therapy twice a week for a few months, and we area already seeing some progress. He even got a hit at the baseball game last week, which is quite a feat when you see two balls coming towards you!

What I am most proud of is P's attitude. He's excited to go to his therapy appointments, and has even willingly left a swimming birthday party to go to an appointment. Although the home eye exercises are hard, he tries hard and we are figuring it out together. I feel so blessed.... I know it may be a long road, but we'll get there!


Susan said...

Oh he is precious, and your story is amazing!

Thanks for sharing today.

So nice to meet you.

s.lange said...

keeping you guys in our prayers - good for you seeking the knowledge and help you needed!

Brooke said...

Wow - you sure have been dealt a heavy hand - but it sounds like you ALL are handling it amazingly well! Keeping you in my prayers sister.

C. Beth said...

You are such a good mama. He's blessed to have a mom who works so hard to figure out what's happening and how to handle it best.

MDO said...

Hang in there girl.

Christina said...

My son who is 7 also got diagnosed with that last year when out of the blue his eye started turning outward. With his they said it's not bad enough to get the surgery. The scary part is that research says that most kids loose part of their vision due to the waiting game. He is still able to straighten his eye but he struggles with reading at the speed for his age. He was also having double vision, headaches and ran into walls. His actual vision is great right now.

Liz said...

sweet, sweet p! i'm sorry you've been going through this but it sounds like you're both handling this beautifully. you're such a great momma, s! sweet thoughts your way!!