Tuesday, February 16, 2010
I'm still recovering.
Yesterday was a very long day, and I think I'm kind of still analyzing all of it in my exhausted brain.
First of all, the fact that the Tuscan Pediatricians committed to including the parental perspective in a two day course on newborn hearing screening is mindblowing to me and they gave me three hours- when does that happen in Italy? One course down...nine to go:-)
My session was after they had already had four hours of intense lessons and lunch- the lunch bomb is serious- who wants to sit through another four hours of lessons on a full stomach when you're in the land of food coma?
And yet, they did...they sat through it all and even smiled.
I need to say this- I have great respect for the work Italian pediatricians do..I've been collaborating with mine for two years now- hard to believe. They work from 8 in the morning until 8 at night and every now and then manage to stop to eat lunch, I think. Then, every other weekend there's a conference here or there- which isn't so bad, because the conferences are in really nice places- from what I can see looking from the outside in- but it's still a major commitment. And, the pediatricians here, make housecalls. They're constantly dealing with neurotic, anxious mothers who call at the first blink of a fever and literally go house to house when they aren't in their medical office. Exhausting.
So, there I was - teaching a three hour course on all of our lives. Instead of beginning the course by speaking English like I did at the Congress, because there were some repeat attendees who had already experienced that show, I started with my favorite quote:
When facing a single tree, if you look at a single one of its red leaves, you will not see all the others. When the eye is not set on one leaf, and you face the tree with nothing at all in mind, any number of leaves are visible to the eye without limit. But if a single leaf holds the eye, it will be as if the remaining leaves were not there.
...written in English. I made them repeat it twice, asked them if they understood the English, then said- "NEVERMIND"
and I went on to the next slide.
After two more slides I displayed the quote again, and made them repeat it aloud two more times. They weren't very enthusiastic, so I jumped up and down and was a cheerleader for a bit. They didn't quite get the meaning, so I said, "NEVERMIND"
I talked through two more slides on the role of parents in the process and projected the quote again, this time with a picture of a tree, a red leaf and an eye. I asked them to repeat it again.
I asked them if that helped...associating a visual image with a message they could not understand.
They said, "Yes."
I said, "Good and NEVERMIND!"
Two more slides and the quote. I had them repeat it. They did, they were tired and frustrated.
I explained to them that for Jordan to understand and learn a word to the point that it became part of his vocabulary, I had to repeat that word at least a hundred times. That every day, Deaf individuals are told "Nevermind".
Then I showed them the quote in Italian. I explained to them that a parent dealing with a diagnosis of profound deafness only sees one red leaf, and that red leaf can be a symbol of guilt, desperation and impotence.
She does not see that tree with all of the possibilities.
I then presented them with the possibilities...
I gave them your children:
I started with a letter written by an Italian mom who complained that her pediatrician did not listen to her concerns, she took the matter into her own hands and went directly to an Audiologist who diagnosed her child with a profound hearing loss in fifteen days time. Her pediatrician then assisted them by attending the exams and researching the cochlear implant..he then became much more attentive when performing routine audiological assessments on all of his new patients.
I introduced them to:
Rachel Chaikof by showing them a video of her speaking French;
Aiden, who ten months post activation ci can understand and say the parts of his face (adorable);
Christian who steals m-n-ms during his AV Therapy with his mom and is a stinker
Hailey...Hailey's mom sent me a video two years ago, where first she talks to Hailey without her hearing aids and you can really see how difficult it is and how frustrated Hailey gets when she can't hear..then, her mom gives her her hearing aids and we see her sign, speak and smile;
I read them another Jordan's mom's letter about her son's meningitis and how the cochlear implant improved his life and added Rachel's speech- K.L.'s daughter, who became deaf as a result of meningitis and who learned sign and speech together;
Val's kids and my kids were shown to say that it does not matter whether your kids are both deaf or not...the important thing is that they have a brother or sister to love and be loved by them;
Lotte Sofi...whose parents are creative and involved and who educate at an international level;
I read Christina's post about when she found out Lily was negative for the Connexin 26 gene;
I showed two ci activation videos- one where a child smiles and another where she cries- reactions to hearing for the first time;
And I told them our story and why it is so important to listen to parents, to provide the correct information and resources and that there are many approaches to deafness...
I showed them this video...
The important thing is to respect the family, realize that each family makes choices that are most appropriate based on the needs of that family and that a collaboration between pediatricians and parents is extremely effective.
I wore a black dress, pin-striped pantyhose and shiny black boots...
Felt like a rockin' nun!