Tuesday, January 8, 2008

THE LONG AND WINDING TUSCAN ROAD

No doubt the best gift I received this holiday season was my iPod, and I am now jamming and typing to the BEASTIE BOYZ. And then there was the worst gift: ANTI-AGING cream. Guess who gave me that one...yup, the mother-in-law. There is a universal sign for that one! Sheeeeit. Since my blog has been recently posted on deafread.com, I feel the need to give a little background on our situation here in Tuscany. For those who already know it, sleep.
I'm from Baltimore, met my husband 19 years ago when I was in high school and went to Grosseto on an exchange program. I stayed with an Italian family who spoke no English, smiled a helluva a lot for 17 days and spotted Luca in the Corso on day 7. Instant attraction - as much as you can have at age 17- so I asked one of the friends of the Italian students -who was that guy with the black leather jacket? The person I asked happened to be his brother, who introduced us and hasn't let poor Luca live it down ever since.
We went back and forth for seven years and managed to make it through college and careers. After one of our back and forth visits, I got pregnant. We got married and Jordan was born in Baltimore in 1996, there was no newborn screening in Maryland at that time. When Jordan was about six months old, we started complaining to our pediatrician at the time that for how alert he was, he was not producing any sounds. Our pediatrician blamed Jordan's lack of vocalization on the fact that Luca and I were a bilingual family - Luca spoke to Jordan in Italian and I spoke to him in English. Three months later, Luca returned to Italy and I stayed in Baltimore with Jordan to finish the school year, I was teaching fifth grade at the time. On June 16th, my family and I flew to Italy, they wanted to personally deliver us to our new home.
One month later I met our new pediatrician, Dr. Giovanni Lenzi, who I am in love with, really (aside from Josh Swiller and Patrick Dempsey). He did some standard one year check up testing on Jordan, was concerned with his lack of reaction to a hearing test - I'm talking not turning to the sound of a bell and began us on our journey. This journey took us to Florence and Drssa. Minna Bigozzi where they IMMEDIATELY fitted him for his first pair of earmolds and ordered his hearing aids. There was NO MENTION of incorporating sign language and I didn't speak a word of Italian at this point. Luca had to translate the entire conversation when I learned that my child was profoundly deaf. The drssa. insisted on speaking to my mother-in-law about MY SON, which really pissed me off, but she soon understood who she needed to talk to because every visit, I came armed with about thirty questions.
The Italian system kicked into action and we began speech therapy four times a week for thirty minutes each session. The National Health Care System PAID FOR EVERYTHING except for hearing aid batteries and they gave and give Jordan a monthly stipend of about 200 dollars that we put towards batteries and trips to Florence. So, while I felt lost and alone in a language and world that was not my own, I had something to work with and concentrate on...helping my child speak. Eleven years ago there were NO support groups, however I did have internet - something almost non existent in Italy 11 years ago and I found the John Tracy Clinic. The John Tracy Clinic helped me keep my sanity at that time filled with temper tantrums, language confusion, and total and complete lifestyle change. I threw up a wall in the face of family and friends because they asked a million questions that I didn't have the answers to and it was just too painful to explain the process of speech therapy and Jordan's stubborn and angry disposition. I understood everything he was going through because I was living a similar exhausting experience trying to learn Italian and communicate so that I appeared somewhat the intelligent person I was in the USA and was told I could ONLY speak Italian to Jordan.
We worked through eight years of anxiety, frustration, language barriers, homework, asthma, speech therapy, etc. and we are so unbelievably fortunate to have found competent and professional doctors, teachers, principals, support teachers, audiologists, psychiatrists (who I tended to RUN TO after every visit to Baltimore), friends and family. Tuscany is the perfect place to raise a child, there is no competition like there is in the US and when kids wreak havoc in a restaurant, the old people don't turn and say "Shut your kid up or leave him at home!" They smile and say what an adorable and vivacious child you have...music to my ears.
(Typing to Christina Aguilera now)As I blogged before, we decided for the cochlear implant when Jordan was eight...a psychologically trying decision, because I finally was forced to make a decision with regard to his deafness. He was born deaf. We wanted to give him the opportunity to choose in life for his future- whether to be part of a hearing world or a Deaf community. He had reached his limits with the hearing aids; my thoughts were that we had chosen this road, so we needed to travel it all the way to wherever it could lead. Really painful decision to operate my child.
Once again, we were blessed to have found a surgical/mapping team up to the task at Pisa's Santa Chiara Hospital. Professor Stefano Berrettini (who managed to perform the surgery and leave Jordan with the residual hearing he originally had in his left ear) and Drssa. Francesca Forli have done an amazing job answering questions truthfully, objectively and they have taken care of my son.
Jordan is eleven years old. Thanks to the cochlear implant - a WORLD of difference from the hearing aids - he is becoming bilingual - Italian-English (hopefully he'll learn ISL or ASL one day, I plan to if they ever offer a course in this town), he is learning to play the electric and acoustic guitar, plays baseball and mangaged to get a B on an Italian essay - miracles never cease here in this Tuscan town! (Ahhh, Maroon Five!)

5 comments:

Anonymous said...

Thank you for sharing your story about Jordan on DeafRead. Do not be taken aback by some nasty commenters. They are just a minority in the deaf community.

I am a deaf mother to a deaf child with bilateral implants. We communicate in ASL and Signed English and he uses his speech with those who do not know sign language. He is doing well as he is comfortable in both worlds.

Best of luck on your journey!!!

anna s

Anonymous said...

I find it interesting to read your experience with your son's cochlear implant. Not sure if you are aware of this organization in Rome and wanted to share this website with you. http://www.mpdf.it/ Dr. Radutzky who is the director is a wonderful person and great resource. Suggest that you get to know her. My belief has been that any child who has CI should also know and be fluent in sign language as well so they don't miss out on anything. I wish Jordan nothing but success.

leah said...

Your experience through Jordan's diagnosis is pretty incredible- I can't imagine being told in another language that my child was deaf! On the other hand, the Italian system has the American system beat with coverage of hearing aids, lol. And don't worry- I got anti-aging cream for Christmas, too. And I'm only 30!

Valerie said...

I asked my school library to put your book in it. I can't wait to read it.

Try Tears for Fears "Everyone wants to rule the world" It will keep you going for hours.

Kim said...

What an interesting and inspirational story you have to share with us! I'm so glad you joined DeafRead!! It sounds like your little boy is making great progress in leaps and bounds with his cochlear implant. I wish you all the best and look forward to more of your blogs!