Monday, June 12, 2006

Taking The Next Step

First, thank you all for your thoughts on my "kids like these" post. I really appreciate the different perspectives.

Shortly after our appointment, I mentioned the experience to a friend. She has three kids and dozens of doctors in her mental rolodex. I thought she could recommend a local second opinion, or at least give me an idea about how to find a Boston one. She suggested I call Ethan's orthopedic surgeon to see if he could recommend someone.

But the next day, before I had a chance to call anyone, she called me at work. "Okay. Don't be mad. I did something."

Turns out, her cousin is a nurse at the local surgeons' group. She called her about the situation to get another opinion. The cousin/nurse reaffirmed that Surgeon #1 is an excellent doctor (which I never doubted). But if we weren't comfortable, there is another doctor in the group that we should meet before going to Boston. She knows him personally as well as professionally and he's "great".

Honestly, I don't want to bring Ethan all the way to Boston if it isn't necessary. So we're willing to give Surgeon #2 a chance first. I made another appointment with him next week. If things still don't feel right, then we'll try Boston.

The paranoid part of me has decided I'm probably the talk of the office now. Surgeon #1 probably feels hurt and insulted. They have staff meetings and talk about That Crazy Mother, the one who is so sensitive. From now on, they'll tiptoe around me trying not to hurt my feelings.

I shouldn't care, but the possible sensitive label has been bugging me. I'm sure there are people out there who think I should just get over it already. Looking at his exact words, he didn't say anything improper about Ethan or special needs children. So why did his words sting?

I'm not one to be bothered by semantics. In many ways, I prefer Rob's language - Ethan's brain is broken. I don't feel I'm demeaning him by saying that. I tend to use the phrase "special needs" as a catch-all because it's faster than rattling off a list of medical conditions. And when people talk about Ethan, I don't care if they say he's challenged or broken or disabled or handicapped or special - as long as they treat him with dignity and respect. He is Ethan before any of those other labels.

The reason kids like these bothered me had nothing to do with the choice of words. It was the attitude behind them. As a doctor who could potentially be operating on my son, I needed to feel that he was treating Ethan the individual. That he was looking at him as a whole person with unique needs, different than the next child that crossed his door with Down Syndrome or Autism. Instead, I sensed sweeping generalizations about children with special needs; a group that is as diverse as any other group of human beings.

No matter what, I'll hold my head high when I walk back into that office. I know that I'm doing the best I can for my children. If that means I have to bruise a few egos along the way, so be it. At the end of the day, their safety and well-being is the only thing that matters to me, and I have to trust they're in the right hands. Besides, plenty of other testicles will come along for Surgeon #1 to fix. He'll be fine.

And if I have anything to say about it, so will we.


Sank said...

Nice new look to the blog Mete. Although, I really liked the boys pictures on the last one.

Cassie said...

I have been checking in on your blog every since I accidentally ran into it as a link from someone else's. I really like how you write. Your last post really struck me. I completely understand your feeling about being labeled sensitive and I think your rationale is right on. I come at it from another side-- that you'll probably soon be seeing-- because I am a special education teacher. Keep battling the assumptions people make that your kid is just like every other kid with special needs. You're the one who knows him best (obviously) and the best advocate to boot. My son was born 11 weeks early and has been diagnosed with neurofibromatosis. We're not sure what may result from this but I am definitely planning to take a lesson from this post you made.

Just Mel said...

Keep on brusing egos and maybe somewhere along the way doctors like surgeon #1 will start understanding that there are no "kids like these" But instead start treating each paitent as an individual.

Anonymous said...

Fight the power!
Let the doctors talk - if indeed they do - behind your back. I'd rather be a sensitive mother than one that lets people dismiss her little boy.