Monday, March 24, 2008

Response to Barb DiGi


I think I'm on the verge of a nervous breakdown. *smile*
*letting fm red hair down*
Okay, Barb. I really appreciate your questions and that you were so intrigued by yesterday's post that you felt the need to write a response on your blog. I have already answered many of these questions in other posts, but I have absolutely no problem doing it again. Each time I write about our experience, I learn something new and as I've already said, blogging, above all else is a cathartic experience for me. I'm kind of super-sensitive today, also because my friend Francesca just left a power comment and reminded me of our elementary school decision amongst other things.

I strongly agree with your first paragraph...
When reading Jodi's blog about her struggle raising her eight-year-old Deaf son, I had to ask her my questions to her question below. The purpose of my blog is not to make any judgment or criticism but to gain a better understanding how a system can be improved for hearing parents of Deaf children to receive better support....and if dialogue serves as a mechanism for bringing about effective change, I am happy to be a part of it.

Barb wrote: "My question is, why did Jodi struggle so much when raising her son for eight years? Did she really have a hard time finding Deaf people in Italy to give her support to learn sign language? Was it really that bad?"

Barb, our experience began eleven years ago. The audiologist in Florence told me my son was deaf in Italian and I didn't speak a word of Italian. Frustrating? You have no idea...well, maybe you do. They immediately discarded learning LIS - Why teach your son sign language when he can learn to speak with hearing aids?, they fitted Jordan for earmolds and ordered his hearing aids. A phonecall was made to a speech therapist in Grosseto and one week later we were in our first speech therapy lesson with Jordan - without aids.

I don't remember how this happened, but I'm sure I was the one curious about LIS and requested that my husband and mother-in-law accompany me to a meeting at the local chapter. I'm actually getting upset here. I felt foreign twice in that meeting and I so would have liked to have learned more but I did not have the energy. I didn't understand Italian and the idea of having to learn LIS on top of Italian was twice the energy that I was trying to recuperate from not being able to speak English with my son.

My husband and my mil did not want to learn LIS and were frankly terrified and overwhelmed by Jordan's deafness, especially my mil, she acted like someone had died. Thank God I did not understand Italian enough at that point to really realize how upset she was by his deafness. I basically tuned out her desperate faces and got REALLY pissed off for my kid who just couldn't hear...that's it.

His deafness did not overwhelm me, I was more terrified by the idea of having to speak to my son in Italian. But, I was VERY determined to do the best I could to give him language.

I concentrated on learning and teaching him Italian.

The rest of the family spoiled Jordan and were scared of him, I think...sorry for him. So, it was me against the rest of the family for so, so long. I was the one who disciplined, I was the one who educated, I was the one who listened to them tell me that children in Italy start potty training at age 12 months...that is why it took two years to potty train, we started too early. I was the one who couldn't speak Italian. (really frustrating re-living all of this)

...more questions: Why was it that your son was not able to express himself adequately? Was it because you and he didn't have access to sign language? Was the Deaf community in Italy that apathetic that they didn't give you support in learning LIS? Forgive me if you had already answered these questions in your blog so please help me understand why he wasn't able to express himself at that time.

Barb, this is exhausting...LIS was not a part of our deaf experience because Italian was the main focus. He wore hearing aids from the age of twelve months. He could hear well with the hearing aids 50 decibels, began speech-reading and was an extremely alert and intelligent baby. He could understand the message but had great difficulty expressing himself...probably because I was his teacher and I had difficulty expressing myself. Our experiences were so similar as were our frustrations, how ironic the idea of leading parallel lives with a twelve month old baby. I swear I understood his every need without him even speaking, but the others around him could not understand and meet his needs, so he became easily frustrated.

This is why I say LIS would have surely made our experience easier, we needed some type of visual bridge at that time - both of us- but I did not realize this at the time...and I hope I have been clear as to why the idea of incorporating yet another language was impossible for me at that time.

For Jordan to learn one new vocabulary word took saying the word literally hundreds of times. We bought him new cars, toys, anything that interested him because when he was stimulated, he learned a new word in about ten times. You can't even imagine how many toys we had in our home. He did not do well with the traditional speech therapy method of sticking him in a highchair to have him repeat sounds and move objects. He learned better while moving, playing, interacting and fortunately he had two teachers working with him in addition to me at home. He learned to read at age four but didn't comprehend what he was reading. So frustrating. His language slowly improved through the years, especially when he went to pre-school and was exposed to better Italian five hours a day, as opposed to my Italian. He had an excellent support teacher in pre-school who actually protected him within the mainstream classroom setting, taking him out of the class whenever she saw he was tired or frustrated.

There is no Deaf community where I live. I have maybe run into three Deaf people who do not wear hearing aids or a cochlear implant in my eleven years here. What kind of life would my son have lead had we chosen to strictly teach him LIS? LIS would have been useful as a bridge, and that is it. With consistent speech therapy, teachers, classmates and my improving Italian, by third grade he had enough vocabulary to adequately express himself but was missing out on the conversations of his peers...and I could see him suffering.


We chose the cochlear implant...the rest is as you know it. And yes, it did save our lives, most of all, Jordan's. He needed the extra hearing it provides to be able to successfully interact with his peers.

Barb, all of your questions involve Deaf parents here, Deaf community there, etc. That is not my reality here in Grosseto, there is no sense of community that I am aware of, just a couple of very nice people who drop by my house unannounced at very inconvenient hours - which is fine, but then I can't really talk. All of our friends, Jordan's friends are hearing except for one boy, Matteo, a year younger and another friend of ours Lorenzo who is adorable and twenty-two. They both wear hearing aids. Jordan loves playing with Matteo.

I don't know your reality, but it is so far from mine. I made my decisions based on my reality and I know you respect that. Barb, I wouldn't have done anything differently because I couldn't have at that time. There were no yahoo support groups, literature on LIS provided, blogs, etc. And even if there had been, my reality was an Italy that I didn't understand. Maybe if my husband had been a little more with it, he could have made more suggestions, but I took control of the situation and he followed offering his support. We all do the best that we can and try to make informed decisions.

Frustrated and stressed??? Barb, are you Deaf? Can you communicate in the hearing world? If you can't than you can understand my frustration and stress because it is the same exact concept. Try going to a foreign country, finding your kid in an emergency situation where you have to make life-altering decisions and can't understand a freaking thing they're saying. So, so frustrating. Do you know what it feels like when people look at you like you're an idiot because you can't speak their language so they automatically assume you are stupid? How about when Doctors talk to your mil and not you about your own kid...they looked right through me as if I was no one. I was the MOTHER.

We got through it all. And here I am now...talking about all of it. I would never say the cochlear implant is for everyone, I will say that it works damn well, much better than hearing aids. If a family decides they want their child with a profound hearing loss to function in mainstream society and are prepared to follow that child with auditory-verbal therapy, hearing aids are no longer the appropriate choice - the cochlear implant is, because there is just no comparison based on my experience. The CI saved "our lives" because "our lives" revolve around my son's life and a happy, affectionate Jordan is a happy family.

BTW - If we were neighbors I wouldn't have such a helluva hard time finding someone to teach me ASL *smile*

I have to go now, my five year old daughter is pregnant with a blue balloon and ready to burst:)...

18 comments:

Dianrez said...

I've never heard a mom so beautifully articulate in telling that mother's journey that we all know so well in its many forms. First of all, a hearty applause!!!

You and Barb ought to get together, you've so much to share and a love of Italy too! She was one of my son's teachers and we remember her so fondly!

Jodi Cutler Del Dottore said...

dianrez,
Thank you so much for your beautiful comment. I dig Barb and her posts, too. *smile* Jodi

Anonymous said...

I fistsmack you and Barb.

If we were neighbors, helluva troublemakers!

White Ghost

K.L. said...

I'm amazed you didn't nuke half of Italy in the process of all that. Sheesh. I can't imagine traveling the roads we've been on while trying to learn and understand a foreign language at the same time. It was overwhelming enough just trying to get it right in one language.

BTW, I bought a copy of Rally Caps to donate to my daughter's elementary school library.

Karen Mayes said...

Nice posting!

My children played with Barb's children when we lived in Rochester, NY and she is a warm-hearted lady who cares about deaf children. One of a few things we miss Rochester a lot is the good times we spent at Barb's house...(another thing we miss is Wegman's... of course.)

Divided said...

I felt exhausted after reading your journey!

I'm sorry you had to go through what you did...alone. I am aware how difficult it can be to be so far away from your family for support...let alone to be in another country not understanding Italian. Dealing with your mil and trying to get others to understand that it is not death...not the end of the world.

It is almost like living in the boondocks here in USA without having physical access to people and resources. It is easier for those who live in or nearby large cities where deaf resources are far more accessible for parents. There is only so much one can do via internet...it's not the same.

I think you are giving a lot of people food for thought.

I've read Barb's post and dig her too...she's a great advocate and I admire her energy!

Anonymous said...

I understand better. As I mentioned, I was appalled at what BOB's (Bigoted Ol' Bastards) the Brits and Scots were when I studied there. From your description it sounds familiar.

David

Anonymous said...

Jodi,
*hug*
--Jenny

Lisa C. said...

Thank you for sharing this with us.

Barb DiGi said...

Wow, Jodi! I am totally speechless or let me say signless when you explained further about your experiences! Trying to imagine what it is like in your shoes, being clueless about Deaf people and their language and even worse learning a foreign language. You have so much on your plate! Dealing with multiple languages that are new to you, both signed and spoken, is indeed a challenge.

I just want to see a better system for new parents of Deaf babies to receive thorough support and it is a dilemma not only in Italy but here in America as well. I believe we can make a difference if we continue to reach out other parents to give them this support.

Thank you for your time to share your experiences. It helped me to broaden my perspective on how parents are dealing with this issue today. I can see that you are in an unique position.

To the commenters above, thank you for the kind words you have said about me. To some of you who know me, I return my fondness about you as well. I know that we are here to welcome parents with open arms and to learn from each other with respect. I am appreciative of Jodi's willingness to be open minded to be a part of this dialogue and I commend her for that! Jodi, you rock! Hugs!

WeeHands said...

What an amazingly poignant post! So glad I found it! Jordan has one amazing mama!

I'm a Canadian who'd like to be in Le Marche :) My italian is very weak and when we went to Italy a few years ago, to visit my husband's family, my 16-month old son (hearing) had about 60 signs. We quickly taught our cousins his signs (ASL) and they spoke Italian to Joshua using the ASL signs...who did it help the most? Me!

Jason Dittle said...

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Jodi said...

Wow another EX-pat experince..I do not have a child here in Holland, but I am sure if I had, I would probably have gone thru the same thing, the Dutch are not a very welcoming people especially the Deaf, they look upon an outsider as a token/ a fad if you will, then I was quickly discarded as OLD NEWS,,( usually after one meeting ) the language is complex and impossible to learn as a spoken language, so I can relate to Jodi who has to depend on her husband and MIL for communication and decison making ( for the most part at least )
Jodi I applaud you for sticking with your guns and doing WHAT YOU thought was the best for Jordan.
I do hope that you will contiune keeping us updated on his progress, and hey if you need another EX=pat friend in Europe, you can contact me any time..
Barb I have always loved your blogs, and I know you are a strong advocate for deaf babies ( there just are not enough of them )
Jodi I wish you all the luck in the world, believe me when i say I know what you are going thru, because I have been living the life as a GHOST for the past 7 years,,
Tot Ziens
Jodi in Holland

Jodi Cutler Del Dottore said...

Hi WeeHands and another Jodi!!! Thanks so much for your amazing comments...GREAT to meet you guys!!! Yes, the international experience is interesting *smile* and we just never quite fit in, do we? But, sometimes it's okay to be a little different viewing everything around us with different eyes. hugs, Jodi

Abbie said...

I always come here to see what it was like to look through the eyes of my mom when she was told that I was deaf. My mom doesn't have the ability to express herself quite the way you can when she battling the doctors, the audiologist, fighting with the school to prove I wasn't retarded all the way trying to teach me sign language and how to properly pronounce words. Its a wonder how she managed to get dinner on the table. Thank you for sharing this with us! This is what we need to see!

Mike said...

Now I understand. You're an American mom in Italy.

In most of Europe, having a disability is a shame and dishonor on the family. tough, you educate them.

seek out other deaf Italians at
from http://www.ciss.org/,
Federazione Sport Sordi Italia
Via Flaminia Nuova, 830
00191 Rome
ITALY
fax: +39 06 3685 6376
e-mail: italy@ciss.org
www: http://www.fssi.it
Member Since: 1926

from http://www.wfdeaf.org/
Ente Nazionale Sordomuti (ENS)
Italian National Association of the Deaf
Via Gregorio VII, 120
00165 Roma
TTY: +39 06 6390354
Telephone: +39 063 98 051
Fax: +39 063 98 05321
E-mail: affari.esteri@ens.it
Website: www.ens.it

According to http://www.dodea.edu/, there are deaf kids at the U.S. military Dependents schools in Italy like
Aviano Air Force Base, Gaeta Navy, Naples Navy, Livorno Army and Vicenza Army.

Christian's Mommy said...

Jodi,
You are such an inspiration. Thank you for sharing your journey with us. I can't even begin to tell you how much you have helped me with mine.

I'm hoping to come to Tuscany one day to give you the great big HUG that I wish I could give you now.

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