Monday, August 8, 2011

20 questions
















My son Ben's genetic deletion happened as a random error at conception.

The way a researcher described it, when my chromosome 8 -- let's call it a green ribbon -- exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped ribbon, a minute piece was left out.

Early on, I found giving detailed histories of my pregnancy painful. Although I'd been told Ben's condition was a random or 'spontaneous' change, I didn't know a lot about it.

So when I was asked whether I had taken prescription drugs, drunk alcohol or experienced 'stress' during my pregnancy, and then was asked all kinds of questions about the actual birth -- including whether he needed oxygen -- it was hard not to feel in some way implicated.

Last week, I was stunned when I did an intake interview with an agency, and was asked the same questions!

I explained that Ben, now 17, had a genetic deletion that occurred at conception -- so I wasn't sure why I was being asked about my pregnancy and delivery. The cause of his disabilities was known and wasn't related to anything I did or didn't do during pregnancy.

The intake person explained that they wanted to learn more about the causes of intellectual disability (I repeated the above, but the person didn't seem able to process it -- or perhaps she was just following orders about filling out the forms).

So we went through a detailed pregnancy and delivery history again. Whenever I was asked a question about something I did or didn't do, or the circumstances of Ben's birth -- and the person took down detailed notes -- I followed by saying: "But the genetic condition was caused at conception. It had ALREADY happened!"

How is this pregnancy information used? Will someone who understands the mechanics of a genetic deletion read it?

Should someone who doesn't understand how a genetic condition occurs be asking questions about my pregnancy?

Reactions:

12 comments:

Oh my. I think I would have snapped at the person and called him/her an idiot. But that's just me. Being a mom of a son with multiple disabilities for 30 years has made me tough I suppose.

My answer to your last question would be no. I sure don't think so.

Oh, how aggravating. And They wonder why we're all so bitter and insane.

Did you have a choice of not answering the questions? Could you have said "Did you read his chart?" I often find that people just do their jobs 'as they've always done them' until they are challenged to change their behavior and perspective, which they won't do without our help (willing or not!). :)

I think you could have declined to answer the questions or answered don't know/don't remember without affecting your eligibility for services from the agency involved or you could have reported your concerns to the agency's executive director and/or change agencies.

Louise,

I know that you kept your thoughts and feelings about the interview to yourself for Ben's sake, but it sure would have felt great to say, "Hey Dumbo, 'Go get a clue!'"

Anyhow, if this happens again, I think that you should take DeeAnn with you!!!

love
matt

This drives me nuts, too! Every single new clinic, provider or organization we sign up with asks the stupid questions. I am always taken aback and comply, and yet I can see myself asking some questions back, in the future, such as, "Do you have any understanding of how or why a de novo genetic deletion occurs? Perhaps you are in the wrong job." Geez!

oh god Louise I was told the same thing by genetics and have also been asked all those questions a few times very upsetting. I know a mom that had the same deletion as my daughter and was convinced it was caused by a dental xray she had done in 1st trimester before she knew about the pregnancy. She was so upset that she brought this on. Which would be impossible. I would hate for her to asked all those questions. Parents need people working with our kids that our really listening to us it sounds to me like he or she asking all those questions wasn't listening to you.

Hi Tim --Well said. I'm really beginning to like you.

Matt Kamaratakis

Thanks everyone -- I supposed I could have refused to answer the questions. I tried to get out of them by simply explaining why they weren't relevant in Ben's situation, but the person couldn't seem to follow this.

It really makes me wonder about the reams of information that is taken -- does it just sit in the patient's chart? How do they use it? They can't use it for research purposes, right?

When Ben was younger I did provide "feedback" to try to improve the system if something like this happened. Who has the time now?

As a parent who is asked this information about my own child and an intake worker for an agency who provides services to those with intellectual disabilities you have given me something to think about.

Thanks.

My son has a SCI from a car wreck. In the initial interview at the hospital right after the wreck, I remember being asked all these questions and he horrible feeling that I somehow had caused this (impossible). I continue to answer those questions and similarly feel frustrated at their relevance. Don't know that I would actually be willing to not answer, probably out of fear that them not knowing something would be me causing something to happen. Not likely, but something that goes through my mind.

I'm grateful for the responses from anonymous and KDSmith.

KD -- your experience sounds horrible and bizarre. I would love to hear more about your son! Louise