The False Comfort of a Diagnosis

I’ve had this conversation several times with various parent-friends, “Don’t you sometimes wish there was a diagnosis for your kid?” Not something serious and difficult, but something simple and easily fixed. Something where a doctor or specialist could say, “Oh, you’re not a bad parent, your kid just has xyz, here’s how we fix it.”

Everyone always agrees that it would be a big help if someone could just tell us which of our kids bizarre behaviors were normal, which would be outgrown, which we needed to address, and which just were what they were, so we should leave it alone.

My daughter is wonderful and perfect, I have no desire to change her. She is, as I’m sure she’d agree, a fairy child. But fairy children sometimes have difficulty fitting in to the human world. It is hard for the human parents of a fairy child to determine which parts of  fairy life will adapt well to human life and which will cause the fairy pain.

So, we had my daughter evaluated and got a diagnosis. In addition to being a Fairy Child, she has poor proprioception and other words I don’t know how to spell. In short, she doesn’t quite feel herself physically, she has trouble taking in sensory input from the world around her. She’s on the low end of the scale, meaning it’s hard to tell and debatable if she even has a problem. This is why it took years for us to get anyone to agree that she even needed an evaluation.

So, I got what I wanted. A non-threatening, non-scary diagnosis, explaining why she acts the way she does in so many circumstances.

But I still don’t know what to do. The O.T. who evaluated her recommended weekly occupational therapy. Unfortunately, no one in the area has a children’s O.T. with room in their schedule.

To confuse matters further, she was evaluated by the school and the school O.T. and her teacher (who has a specialty in special ed) see no academic reason for intervention. She is magically, doing great in school now. Plus, there are things that others with her diagnosis have trouble doing that she can do without too much trouble, things like riding a bike.

So, what do I do now? Do I push to find her an O.T., possibly driving a long distance weekly for services that she may not need? Or do I leave it alone, possibly losing valuable years where she could be helped and condemning her to a miserable life where she spends every day cursing her luck at having such a horrible mother.

As though I weren’t confused enough, over the past few years I’ve discovered that every single intervention my parents tried to make to help with my own physical/learning problems was wrong. This isn’t my normal issues with my parents. For once, I actually don’t blame them. But, it turns out that everything they tried to do for me from my orthodontics to my orthopedics (teeth to toes) has caused long term physical problems for me. My educational problems were most likely wrongly diagnosed and labeled.

The one medical/physical decision they made that was probably correct? They rejected a doctor’s suggestions that my delayed development/height issue be treated with hormones. Every intervention that they did turned out wrong. The one intervention they didn’t make, was just fine (yes, I’m only 5 feet tall, but I did eventually grow breasts).

So, I got my wish. I have a diagnosis, but the truth is, it’s not much help. Diagnosis or no, when it comes to our children, we all just have to muddle through.

 

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2 Responses to The False Comfort of a Diagnosis

  1. Carrie says:

    I have felt the same way for the past year or so. Do nothing and become the lazy parent who didn’t stand up for her child, or intervene and be the parent who caused her kid social agony and stress? It doesn’t help that the school seems to never want to make recommendations for fear of being held responsible.

    I’m still leaning toward nothing at this point. Hey, compared to kids in past generations, they’re lucky just to be able to go to school and not get rapped with the ruler. Compared to kids now in other areas and circumstances, they’re so, so lucky. They’ll be OK.

  2. Chrisie says:

    Marta,
    Unfortunately, our children do not come with a manual. Every day I question my parenting decisions. You know your child best. What would an OT do that you can’t try to do and see if she is responding. Balancing our childs needs is a great struggle. Every day I worry that when I listened to my teenagers I didn’t do it well; when I gave them advice it was either too opinionated and not objective enough or not supportive enough. Every single day I am certain I make many parenting mistakes. When they are struggling with relationships, friendships etc…should I offer them therapy or place them in therapy… Trust yourself…you always have your child’s global best interest at heart…go with your heart.

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