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Monday, January 5, 2015

Eye Puzzles

Do you ever feel like you're missing something with your kiddos? Like you haven't found that one important piece of the puzzle, and you're looking all around, under the table, in the puzzle box, in the dog's mouth, and you just can't find that missing piece? And then you wonder if you might be crazy. Maybe the puzzle is supposed to have a blank spot right there. Maybe the puzzle is complete in its incompleteness. Maybe the puzzle is just perfect the way it is, meant to be the way it is. Maybe it's your own problem- maybe you're trying to make the puzzle something it's not supposed to be because of your own control-freak-ness.

I feel like that a lot with my kids. Am I missing something? Or is this as good as everything gets for them? Is there any part of their bodies, minds, souls that I'm forgetting to check that could be a big part of making their lives easier and happier? I'm always on the hunt for something new that I hadn't thought of before. 

This line of thinking led me to our OT, as it often does. We talked about Ben's vision issues, and whether he really was struggling despite the fact that our ophthalmologist said his vision was great. Our OT said she did believe that Ben was telling the truth and there was more to the picture than our ophthalmologist could see. I had our OT do a visual screening on all four kids. She said they all have some issues, and all the issues were different. She recommended two developmental optometrists, who use two different ways of approaching eye-brain problems. 

Ben saw one doctor first. We discovered that of the three skills needed to be able to track when reading, Ben's eyes don't do any of them well. He has several significant eye-brain issues. It's not that Ben can't read. He can. He can read really big words too. The doctor said it's not that Ben needs a bigger vocabulary, it's that he needs help to train his brain and eyes to work better. 

When he reads to himself, his comprehension is at a 4th grade level! When he is read to, his comprehension shoots to a 10th grade level! Good lord, how has he made it this far in school without anyone noticing this huge deficit?? No wonder he fights when he has to read to himself. He omits words, adds words that aren't there, can't keep his place, doesn't know where to look for the next word to read…the doctor said he has figured out how to compensate very well and has coping skills, like talking himself through hard tasks aloud, that the doctor would recommend that Ben learn if he wasn't already doing that. The doctor recommended that anything significant in school must be read aloud to Ben in order for him to really understand it. This includes tests, text books, etc. He said that Ben will always struggle with these issues, but that they can get a little bit better and easier for him to deal with, given the right treatment.

This doctor helps train people's brains to get better at visual skills by doing weekly therapy for as long as is necessary. For Ben it would be at least a year. The doctor is 45 minutes away, and given the other kids, their needs, our crazy schedule, the expense of the therapy that insurance doesn't cover, Ben's lack of compliance with "homework" of any kind including therapy homework…it sounds like a lot to commit to. 

Jonah went to the other developmental optometrist, who uses a different approach to treatment. We found out that he also has significant eye-brain problems. All of this is so foreign to me. I've never even heard of all the issues that the kids have. I had no idea eyes could impact every single thing in your brain and body, emotionally, physically, psychologically. So I probably have a bunch of facts wrong, but I'm doing my best to figure it all out as quickly and thoroughly as I can. I'm also struggling because I'm running into a lot of doctors who, although they are insanely BRILLIANT and GIFTED at their work, have a hard time talking to me in words I can actually understand.

So given all that, my understanding of Jonah is that his eyes are not interpreting the world correctly. Especially when it comes to sensory input. She said Jonah is a "bottom line guy." He gets the main point of things, or one part of the big picture. But he misses everything else. He misses details, scenery, little facts--all the things that make reading, studying, and just plain living, interesting and special and exciting. The doctor said what would really help Jonah is to have prisms put into a pair of glasses. The prisms bend the light rays that enter Jonah's retinas so that his brain interprets the world more easily, and his brain won't have to work so hard to decode information coming in. This will help Jonah not get so overwhelmed all the time, in most situations. It will help him with reading, at school, copying things from the board to paper, riding his bike, just everything. Everything. How did I not know this was going on with the poor guy? Crazy.

Aidan went to see the same doctor Jonah saw. The doctor showed me some of the tests she did on Aidan, so I got to see with my own eyes the evidence of what she saw is happening with him. Again, mind boggling. I don't understand it all yet,  but I know it's real. She said that Aidan's left side of his body is "fragile." It isn't interpreting information correctly. The information from the left side of Aidan's body goes to the right side of his brain. The two sides of his brain get conflicting information, conflicting pictures of what is happening, where he is in space, who is saying something important to him, etc. His brain can't make sense of the two conflicting pictures, so it just decides to shut down and tune the world out! What?!? This describes my Aidan to a tee!! He's so tuned out so much of the time! Now I know why! The doctor said, and demonstrated to me with a pair of temporary glasses, that Aidan needs glasses that are just blank on the right side, and on the left side the background is somehow magnified four times. This will help the two sides of his brain get the same information, the same picture of the world. His brain can then work as a cohesive unit and won't shut down the way it normally does. He'll be able to concentrate better. He'll be able to make more sense of the world, and participate in it more! It's so exciting! How did I not know this was going on with the poor guy?

As an aside, this doctor said that in her humble opinion, Aidan does not have ADHD. I said I totally agree. The doctor said he has visual processing problems, and maybe some other issues also, but those things don't equal ADHD. To which I replied that this is the reason I refuse to put him on ADHD meds. We've tried a host of pills to help him at school, and nothing works, so I'm done. We've lived through the negative side effects and I'm not willing to have my kid on meds that don't help and make other parts of his life worse. So we'll see how the glasses impact him.

I took Ben to this same doctor for a second opinion, and to see how she would treat his eye-brain problems. I didn't tell her what the first doctor had said, because I wanted to see what she would come up with and then decide which doctor, and which treatment, I wanted to pursue. The doctor said there were many problems going on with Ben's eyes and brain. They aren't working the way they are supposed to when Ben is reading or studying or just looking around, living in the world. The doctor said that Ben would benefit from special glasses also. He is more complicated than the other kiddos, so I'm not really sure what's going to be in his glasses to help him interpret the world. 

But I do know this. The doctor gave Ben a book and asked him to read a passage. Ben held the book close to his face and slowly struggled with the words. The doctor stopped Ben, and put some special glasses on him. She asked him to read some more. Ben held the book at a normal distance away from his face. And then he completely lit up like I have never seen him before. He yelped "I CAN SEE IT!!" His whole body was taken over by joy, by ease, by excitement. I got all teary while I savored this life-changing moment, just watching him experience this for the first time ever. I couldn't believe it. I just couldn't believe it. How did I not know this was going on with the poor guy?

We decided we'll try the glasses before looking into vision therapy. It just makes sense at this point, and like I said to the optometrist, Ben has to work so hard at so many things in life. It would be such a gift to be able to give him something to make his life easier. Just put these glasses on your sweet face, and kapow! The world becomes a clearer place. A place that makes more sense. A place he can understand just a little bit better. No therapy, right now at least. No vision exercises for homework. No frustration for once. Just kapow. It's better. The doctor said he may need vision therapy down the road, but right now this is a good starting point.

Then there is little Miss Ella. Our OT said that when Ella's eyes were tracking, they were having little tremors. So I thought we should have the developmental optometrist take a peek at her peepers too. As long as we're spending a gazillion dollars on all her brothers, because insurance doesn't cover all these incredible things that they really, truly need, we might as well make sure Ella's eyes and brain are ok too. 

Well guess what. Her eyes and brain are not ok. Go figure. The doctor did all sorts of tests. Then, with her data and test results in front of her, she asked my tiny girl in that big chair if when she reads, the words sometimes float off the line. 

Uh, what now?? 

And then, get this, Ella calmly nodded. Um, what now??

The doctor asked if Ella had ever told Mommy and Daddy that this happened. She said no. The doctor said she has never had a child say yes to that question. I guess kids just assume that this is how it's supposed to look when you read. The doctor asked Ella to look at a page of words and point to one that was floating. She did. Then the doctor had Ella try on a whole bunch of lenses and do some more tests. When the doctor was satisfied with the lens combination, she asked Ella if the word was still floating. She said no! The doctor explained that the centers of Ella's eyes and peripheral vision are not linking up. So they're not working as a unit to interpret information. So words float when she reads. What?!? How did I not know this was going on with the poor girl? 

The doctor explained a whole bunch of information about reflexes and chemistry and other stuff, but the basic, important thing is that these glasses will help Ella in every area of her life. The gross motor and fine motor skills she has a history of struggling with will be easier for her to master. Her speech delays could improve. Her sensory processing disorder may change or improve. And reading will be so much easier. My little girl has such a fire for learning, I couldn't believe that she has been struggling so much and we didn't even know. She loves reading, she loves writing, she's constantly (CONSTANTLY) asking me how to spell words, or "what does this spell" as she recites the letters of a word she sees. It's no wonder some kids lose that passion for learning if they have issues like my kids have with their eyes and brains. If the world is such a difficult place to interpret, and you don't know how to tell anyone you need help because you don't know you need help, it's no wonder kids -my kids- are frustrated, moody, irritable, aggravated, irrational, anxious, and tuned out much of the time. 

So no, I didn't even know this was an area that I should make sure my kids weren't struggling with. I would never have known that "developmental optometry" was a thing, unless our blessed OT had told me. And given me references. And held my hand as we went down yet another new path. But at least we know now. I feel so badly that Ben and Jonah have struggled for 12 years with their eye-brain problems. I feel so badly that Aidan has struggled for 9 years and Ella for 5. 

BUT. We found out now. This is the end of that struggle for them. From now on, we have doctors to help us. We have glasses and maybe therapy to help us. I know this is an area we have to monitor and check up on, so now it's on my radar. My kiddos' lives will be easier, at least in the eye-brain department, from now on! Well, from next week on, for Ben and Ella. Their glasses will take a week to arrive, so you can imagine how many zillions of times they have asked me every single day when their glasses will be here. 

We found out now. And I'm sorry I didn't now to find out earlier, but I have to keep reminding myself, we found out now. If you don't know something, you don't even know that you don't know it. I didn't know I should be checking eyes and brains. It's not "standard care." Had it not been for our OT, I still wouldn't know and my kids would all still be struggling. Thank you again, Laurie. Thank you again.

So we'll see how it all goes. I've noticed since Jonah got his glasses a couple of weeks ago, that he does have fewer frustrated meltdowns- the kind that used to involve laying on the floor kicking and screaming. That is a huge improvement. Since Aidan got his glasses, he makes eye contact more often!!! He looks between people who are having a conversation!!! Yes, he's still tuned out, or tuned in to Minecraft much of the time, but there are improvements. Today is the first school day that Aidan has his glasses, so I'm anxious to see how things go there. It's a work in progress. But at least I feel like I FOUND one of my missing puzzle pieces! Times four! I feel ecstatic and joyful about that. I did it! I found it! Sometimes it pays to keep searching. To never rest, to always be thinking outside the box of "normal." Just in case that puzzle piece is outside the box.

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