Mental Health

"Evan's EEG showed some abnormal movement. It appears like it could be epileptic. We're going to do two things. 1) Start Evan on a low dose of medication, and 2) Do a sedated MRI to get more detailed imaging of his brain, particularly in the place where the movement was."

Now I'm having a hard time with this post. Being a few days removed from the news I'm less emotional about it now, and I don't quite know how to be "PC" about mental health, but I feel it's important to open this discussion, so here goes...

I have seen many instances where parents receive a diagnosis for their child's mental/learning disability and become very distraught or depressed. I've never quite understood the reason for being upset. To me, I felt like parents should not really be surprised to be told their child has a disability--like, say, autism. They have seen their child's abnormal behavior, probably know something is different, and a diagnosis would probably be a relief. Now they can move forward with therapy and whatever other services they need.

I wasn't told that Evan has epilepsy, exactly, but we are essentially treating him now as if he does. And hearing that news was a lot harder on me than I thought it would be. Shouldn't I have been relieved to have a possible answer for his problem?

I wasn't expecting anything to come out of the EEG. I was expecting that Evan's tongue-twitching episodes were going to be unexplainable, and I was going to be okay with that because it would be easier than hearing that something is physically wrong with your child's brain. I absolutely know that people can live happy, successful lives with epilepsy. I know several of these people. But my honest first thought was fear. Would he be able to get married? Can he live independently? Will he have many true friends? What will people think of him? I was scared. I was sad for him. And now I can understand why parents have a hard time receiving a diagnosis. Although I could already sense that Evan is different, saying 'epilepsy' makes it definite. The odd behaviors that I hoped were just him being a 5-year old may be lifelong challenges. That's a heavy burden.

There are two things I'm processing right now: How Evan actually behaves, and the epilepsy (or I'd even say the spina bifida) STIGMA. People with epilepsy aren't "slow," "dumb." Not everyone with spina bifida is "socially awkward," has "learning disabilities," "walks funny." I have felt, though, that these LABELS are very prevalent. Some labels are based on truth. Some are based on experience with one particular person rather than the majority. It's hard to be given a label and not start to fall victim to stigma thoughts. On the other hand, I don't think you can just erase or ignore a label like a mental disability. I've had well-meaning people say things about Evan like, "But he's so smart!" "He has so much personality." Yes, that's very true. I hope these people are getting a more accurate view of epilepsy and spina bifida than the stigma allows. You can be smart and have personality even if you have a mental disability. I think that's the moral of this post.

What do I want you to do? I want you to treat Evan normally. But, if he responds in an abnormal way, please be understanding that he has a few diagnoses that affect his interactions with the world. And please love him anyway.