Wednesday, March 12, 2008

What's in a Name...or a Diagnosis?


A few weeks ago I was talking with a friend about her desire to forgo getting a formal diagnosis for her daughter who has different needs. She didn't want her daughter to be labeled. She didn't want children in school saying "Oh, that's the girl with CP". I have been thinking about this ever since.

Although I was anxious to put a name on her developmental delays, the doctors deferred giving Grace a diagnosis until she was almost 2 years old. I kept hearing that regardless of a diagnosis, the treatments would be the same. However, for me, logic dictated that we give the affliction a name. How would I research and attack the issues when I didn't know what they were called? Surely we would need a diagnosis for something....if only for for insurance purposes.

Well, I've really started reevaluating this thinking....do we really need a diagnosis? Do I really need to tell people that Grace has Spastic Quadraplegia Cerebral Palsy? Why do I always have this need to explain the entire situation to people? Can I just simple say..."She has some spasticity" or "She has some high tone in her muscles". Maybe I'll just say..."She's Grace...she's an incredible little girl...get to know her...you'll absolutely fall in love".

8 comments:

Patyrish said...

I feel the same way. I find myself trying to explain things to death and most of the time I just frustrate myself.

I might just start saying she's a miracle, you should be in awe.

Melissa said...

Well said Jacolyn!

Anonymous said...

Amen girlfriend, Love Grannie D.

AZ Chapmen said...

I THINK THE LAST ONE IS THE BEST I AM GLAD Y ARE BACK TO BLOGGING COME VISIT

Shannon said...

We put off a diagnosis for insurance reasons. Then, it didn't change anything when we did get it because we had been saying it all along. I guess that means that I don't mind the diagnosis but I don't need it to define Ben’s needs.
I have found that I use it to help people understand Ben though. It is as if giving his challenges a name puts people at ease. They need a definition. I don't know how I feel about that...

Anonymous said...

Your last sentence says it all. Remember, Grace means "a virtue coming from God" or "God's favor". What a beautiful child! Rolanda

Jackie said...

Well said Jacolyn. Thanks!

twinmama said...

We didn't get a diagnosis until Hannah was almost 2 1/2, for many of the same reasons as the person you reference in your post. We were pretty sure that was what was going on, though.

Like Shannon, I feel having the diagnosis has helped me to explain Hannah's needs better and get more support from people. But I am realizing that while it can be useful to share, with the diagnosis also comes so many negative assumptions and misperceptions.

I want the world to know Hannah as a funny, smart, beautiful, cool kid who also has CP. All of those things are such a key part of who she is. But I can't figure out how to say ALL of that without reducing her to only ONE aspect of it.