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Friday, November 14, 2014

Detective Mama

For about the past year, Ben has been complaining that he can't see right. He refuses to read. He can't finish his books for his English class book reports. He has to be read to. In his IEP, he now has an accommodation for audio books, because reading is met with such resistance. I keep taking him to the eye doctor, three times this year (!), who keeps saying his vision is fine. Which makes Ben frustrated enough to spit nails, and swear words, all the way home from every appointment. Because he feels like something is wrong.

So I decided I would believe Ben. There has to be more to this eye story than meets the eye. (ha! see what i did there? pun intended. so witty.) I talked with our OT, who is wiser than any wise human being should ever be able to be. She suggested that I take Ben to a developmental behavioral optometrist, who could check for eye issues that go beyond just sight. We got on the appointment waiting list two months ago, and today was our long-awaited appointment. 

I took Ben out of school this morning and drove the hour to the appointment, with tentative hope blooming in my heart. Is there something real going on with Ben's eyes that we can fix? Have we just missed it all these years? What if I'm doing all this work and it's nothing? I should believe Ben, even when his complaints go beyond things that I understand, right?

We got right in to see the doctor. He was unassuming, pleasant and direct, and got right down to business. No small talk. He has a faint accent that I came to completely love in our hour together. During our meeting, he grew on me. By the end of our meeting, I can say he is my second most favorite person on Earth today. (Our OT is my first favorite person.) The doctor did some simple tests on Ben. Then he spoke to us about what he found with these preliminary tests. 

The doctor said Ben's eyes and brain struggle with tracking, processing, and convergence. So things like reading across a line of words is hard. Ben sees double at a point where his eyes should still be working together to see a single object. Something like copying from a board to paper is very hard. Spacial activities, like keeping space between the words you write, is difficult. Basically, there are significant problems!! I know, I shouldn't be ecstatic about this, but I am! There is something very wrong with the way Ben's brain and eyes work, and there are things we can do to help him!

I wanted to jump out of my seat and hug this man! Everything he said was what I've been watching Ben struggle with. Every time Ben said "I don't want to read" and I would read to him instead, I worried I was giving in to a petulant, spoiled demand. But something in my Mama Heart told me that this was what Ben needed, so I kept on advocating for him. Despite people thinking that I was just a pushover and my kid was lazy. I advocated for Ben to get audio books at school instead of having to slog through the written words. Alex and I read to Ben when necessary at home. Alex writes Ben's math homework out for him while Ben dictates, because Ben can't keep the numbers organized on the page. We just decided to believe that Ben was really struggling, because he said he was. And he was completely right!!! My heart just swelled as we sat in that office today. When we find a missing piece of the puzzle for our kids, I'm so happy. There is something wrong with Ben's eyes and brain. And it's something that we can make better for him! Through vision therapy and accommodations at school and in life! Can you even believe it? I'm so excited. 

The doctor explained to Ben that he is very smart, this isn't happening to him because he's not smart. It's just that his brain and eyes are having to work so so hard to do things that most people take for granted. And that is exhausting and frustrating. Life shouldn't have to be that way. There are things we can do to help him. Ben rocked back and forth in the big patient chair and beamed. The doctor also said several times that I really need to thank whoever sent us to see him. Whoever caught this, he said, deserves a BIG thank you. Thank you Laurie. Thank you. I will forever be thanking you for all the gifts you give our family.

We go back to this wonderful doctor in a few weeks for much more extensive testing to get more specific details about Ben's areas of weakness. Then we'll have a meeting for just Alex and me to talk with the doctor about his findings. The doctor will write a report and specify what accommodations he thinks will be helpful at school. And we'll start vision therapy.

So yes, our life just got a whole lot more complicated. I'm not sure how we're going to fit all of these new things into our already-packed lives, but we always make it work. We always just do what our kids need to have done. One step at a time. 

On the way home from the doctor, I had a long talk with Ben about what an incredible self-advocate he is. He kept telling me there was something wrong. And he was totally right! When the regular optometrist said Ben is fine, he wouldn't take that for an answer. I told him I was so proud of him, because he is very in tune with his body and knew that he needed help. This kid doesn't make stuff up. And I do see how if you don't REALLY know him, he could seem like the kind of kid to make up a whole bunch of tall tales. I understand, to some extent, why people at school have thought of Ben in negative terms in the past- "Lazy." "Manipulative." "Difficult." But if you know Ben, the real Ben, you know he is anything but those labels. He is intuitive. Kind. Beautiful. Wise. Hilarious. Gifted. Caring. And a great self-advocate. That's why I get so insanely pissed off when people don't see my boy the way I do. Because I know the way I see him is the truth. I know when he says "Yeah, that doctor said my eyes are fine, but they're not!!" that there is truth to that. He tells the truth. And I'm proud of him for that. He tells the truth even when the world tells him he's wrong.

Ella had OT this afternoon, and I talked with our incredible OT about my concerns for the other kids where their vision is concerned. We decided the other kiddos will all have special screenings next week done by the OT, to see if they may need to go see our new most favorite developmental eye doctor. I'm in the process of doing more research about all this, of course. And we'll know more after our next round of testing. But I have a feeling Jonah and Aidan probably have some of the same issues Ben does. So we'll see how many kiddos I end up needing to trek an hour away for vision therapy every week!

I can't even imagine how frustrating it must be to go through life being told that what you are struggling with is imaginary. What if we hadn't believed Ben? Think how much more difficult his life would be if we didn't get him this vision help. Think how frustrating and debilitating and overwhelming and self-esteem-crushing it would be to live in a world that didn't take you seriously, didn't believe that you are telling the truth when you say you're struggling. 

I'm patting myself on the back a teeny bit right now. I know that people who don't know me well think I'm a little kooky. Ok, people who know me well think that too, but hopefully they think that lovingly. Other people have told me I overreact to my kids' issues. That I'm making things up for attention. They "parent-blame" and say I'm the cause for my children's special issues. 

To them I say…whatev. You can think anything you want about me. I do not overreact. I advocate. And yes, there is a fine line between the two, but I walk it well. I have loved ones (aka my amazing husband) who reign me in when I'm freaking out and worried and sad and down about whatever a kiddo is going through. I have loved ones who boost me up and support me and pull me through tough times. Most of the time, I do not overreact. I advocate. I choose to believe my son when he says there is something wrong with his eyes. Even when the medical world (which can be intimidating) tells us he is fine. I choose to believe there is something more that must be done, because for reasons I sometimes don't understand, my son is suffering. And that is unacceptable as long as I have a breath in my body. I will not rest until I find ways to help my children to live comfortable, happy, healthy lives. 

People are often uncomfortable around advocating parents. We rock the boat. We shake things up. We demand change. We choose to believe our children when they say something is wrong. So whatev, doubters. There's no overreaction here. Only advocating. And look what it got us today- a solution for sweet Ben's eyes. 

As we left the doctor's office today, Ben and I did a happy dance in the hallway while we waited for the elevator. We did it. We knew we weren't crazy, and we solved a piece of the mysterious puzzle that is Ben. We jumped and hugged and laughed. From the outside, it must look a little loopy to be so happy when you just found out that your son has a significant  brain and eye problem. But my theory is always that my boy has this significant problem, whether I choose to believe it or not. Whether I have a name for it or not. And it's more maddening to not know what is making him suffer than to just figure it out and deal with it head on. There are always solutions to everything. Sometimes the solutions are a little bit outside of the realm of "normal,"  but I love abnormal solutions. I love thinking outside the box when it comes to helping my loveys.
I used to think that as the kids got older, I would have fewer mysteries to solve for them. But that hasn't been the case. The mysteries continue. I am officially Detective Mama. And I solved a big case today. Tonight I will relish a delicious slice of peace. Peace, knowing I believed my son. I listened to my son. I helped my son today.