24 hour rule

In many hockey leagues they have what is called the "24 hour rule". This rule is imposed to help parents and coaching staff deal with situations that are emotionally charged. 24 hours usually gives both parties some cooling off time and an opportunity to gather ones thoughts into a more productive meeting to resolve issues.

I applied the 24 hour rule to myself after what happened to me on Monday at Will's first meeting with his developmental specialist. During the visit I was actually in shock. The drive home from the inner-city gave the shock a chance to wear off and then the red-hot anger set in.

What happened during what was supposed to be a recheck of Will's ears and a quick physical for school entry purposes was a nightmare. I met the "specialist" and we proceeded to go over Will's medical history, it was just what I expected. Then the specialist turned to me and asked if we had seen a geneticist before. I replies yes, and even made a comment on how sub-par I found the experience. "Well", she said. "Let me tell you the truth". She then launched into the medical explanation of what DS is. The very same speech I heard a 1000 miles away, the very same information that can be found online in a myriad of places or on a simple pamphlet. Did she really think I did not know what DS was? She then informed me that she was also a geneticist. Then came part two of her "informational" spiel. "Do you know what the odds are of a woman having a child with DS?" and she proceeds to regurgitate the figures. I interjected tersely and told her yes, I've seen the graph, but she continued anyway. When she came to 45 her eyes widened, and her eyebrows rose, much like someone telling the scary part of a story to a child. "When your 45, your odds are 1 in one hundred! Now with you, already having a child with DS, it's one in 50!" The one in 50 was said very slowly and with a breathless quality to suggest a scary, dramatic climax to the speech. "So, the moment you ever find out you are pregnant you come to me right away and we can arrange the testing, some testing can be done well into the first trimester now you know, and then we can discuss your options."

I could feel the blood in my face getting hotter. It was like a mask and I didn't think I could control even my facial expression. I was totally in shock, my mind racing, thinking of a flood of things I needed to say, but I couldn't. I couldn't start, I knew I would start to cry or shout profanity at her.

On my knee sat Will, who was there to get his ears looked at and this crass, socially inept woman was telling me how we can make sure another Will is not brought upon this world! How cold and clinical of a person do you have to be to behave in that manner? How am I ever to think that this woman sees beyond disabled children as subjects for scientific research? She is trying to eradicate them from the world in one moment, can she really "love" to help them the next?

I have had two first hand experiences with very highly educated geneticists and all they have had to offer me is a cynical, cold regurgitation of nothing someone cannot research on their own on the internet. The face time with these kinds of people when making decisions is intimidating and, beyond the medical explanations, vague to even misinformed. The same medical explanation can be found here or a number of other reliable places. A geneticist will also create a "pedigree" of your family, which, if you've already tested positive or had a baby, is totally besides the point. And don't just take my word. Any parent I have read online has said the same thing.

I am, of course, looking for a new doctor for Will. A doctor who will not overstep their bounds and feel the need to discuss my reproductive future with them. Someone who will enter the room and concentrate on Will. Someone who is not going to worry if another child with DS is born to this world.

I am also going to be sending a tersely worded letter to the doctor and the hospital. Maybe I will send along a copy of GIFTS as well, but I'm afraid it will not be read by someone who is so obviously on a mission.

I am still very angry and upset about this. I think it's going to take much longer than 24 hours.