Monday, November 26, 2012

The Power of Social Networking to Link Patients with Medical Professionals

For four years, I have been speaking at Medical Conferences to share our experience with Jordan's hearing loss, but recently a different type of conference has been spontaneously popping up as an initiative linked to the Italian forum I created three years ago.
What is currently happening in Italy is that Medical professionals involved in hearing loss are attending conferences sponsored by Parent Associations throughout Italy. These medical professionals are sharing their knowledge at these meetings without receiving credits or payment, because they believe in what we have created. And they are listening to what we as parents and ci recipients have to say about the journey and a variety of different experiences.

The collaboration is resulting in a network of families, recipients and professionals that results in quicker contact, more resources and pressure on the CI companies to create better products quicker. The more we as families are informed, the greater our demands become.

Five years ago we decided to basically make our life public to try to help other families in our same situation. Yesterday, a mom stopped me to tell me that when her daughter was diagnosed at two years of age, she surfed the internet for information and found a video of Jordan talking about his ci. She said listening to him talk gave her hope. Her daughter is now four years old and has bilateral cochlear implants- she's doing amazing. Five years ago, we created a community of ci bloggers. I met Aiden's mom Tammy along the way, and yesterday I talked about their journey and a comment she made: there are three groups of people I always encourage families new to this journey to find - those who walked before them, those who walk hand in hand with them, and then when the time comes, those who walk behind them. 

During the lunch break, the mother of a forty year old with profound hearing loss pulled me aside to thank me for my presentation. She said forty years ago, no one spoke openly about disability and she had had no one to help her in her journey. The father of a forty-three year old bilaterally implanted after 40 years of hearing aids said the same thing. Their children were labeled led a restrictive life due to prejudice and discrimination. No one talked about disability other than to say, "There's the Deaf child".

Times have changed. 
Times are still changing. 
Raising our children's voices begins with our ability to raise our own collective voice, which is becoming stronger.
The critical moment when we start raising our voice begins on the playground when a curious child walks up to you and says, "Hey, what are those things in your child's ears?"
And you respond.

Tuesday, November 20, 2012

What will you be when you grow up?

My first course was an emotional experience, especially because Jordan was with me.
I divided the day into two parts: the morning session with teens and an afternoon session with the families of babies-children-teens with profound hearing loss.
The theme for the teens was: Who will I be when I grow up?

The various slides and presentations served to motivate the teens to consider all aspects of their identity. I showed a couple of optical illusions to reinforce the point that not all in life is as it seems and that oftentimes we need to alter our focus to truly see all of the possibilities. What resulted from our discussions was that the teens did not totally consider themselves as Deaf, nor did they consider themselves as "Hearing". We talked about "Tweenersville", a concept I first discussed on this blog four years ago. They feel a certain peace in Tweenersville, especially during our session, because every single person in that session belonged to that land in the middle between silence and sound. 

I asked each of them to turn off their amplification, then I distributed post-its to each person and asked them to describe their sensations. Here are some of their responses:

When I turn off my ha/ci, ...
I see everything that surrounds me with different eyes...
I feel peace/apprehension
I don't hear anything
I feel at a disadvantage and alone
I feel like I am no longer a part of this world, I try to hear as much as possible even though I know that if someone speaks to me, I can't hear them
I feel like I'm in another dimension where there is nothing but vibrations
I am in my world of silence where only I exist

and then...
When I turn on my ci/ha, ... 
I hear sounds, voices, footsteps
It seems like my mind opens because I have returned to reality
I feel relieved because in this way I can be a part of everything that surrounds me and I truly feel like I am a part of this world
I feel happy, a person like everyone else
I feel free to hear the sounds and melodies of the world.

We did other activities, but this is just to give you an idea of how deep the discussions got during that session. The group of teens were extremely united among themselves thanks to the commitment of the Association who invited me to hold the course. It is so important to give our kids the opportunity to meet other children living similar experiences...not once in a while, but often.

After lunch, I met the families. I presented a Powerpoint "It isn't a sprint, it's a marathon"- the concept Naomi Higgs has shared since the beginning of the Ci Circle. I also used an article on disability that a CI Mom suggested after my request for resources. The article states these 7 fundamental points/moments that we all experience during our journey:
1. I am tired.
2. I am envious.
3. I feel like I'm alone.
4. I am scared.
5. Could you please stop saying "Poor child".
6. I am human.
7. I would like to speak about my child / It is truly difficult to speak about my child.

All of the parents could relate and those further along the path spoke of how exceptional their experience with their children has been. They spoke of the strength they never realized they had, and when the mother of a 4 month old stood up to say, "I hope I will have the strength to help my baby like the rest of you have had..." there was a collective response: "You will find that strength."

Tuesday, November 13, 2012

Flooding in Tuscany

It hasn't rained in I don't know how long, so the combination of heavy rains with a lack of attention on behalf of the politicians of Grosseto in cleaning the sewer system left Grosseto slammed with high water and flooding. For the first time in the 15 years I've been here, schools were c l o s e d!

So, this morning we took a family field trip to assess the damage done.
Sofia broke out her notepad and Jordan actually left his room to have a look at the Ombrone River next to our home.



Monday, November 5, 2012

Request for Resources: A Full-Day Course offering Parental Support

It's been a long time.
Jordan's in his third year of high school- in Italy they go for five. He's thinking of moving back to the States to avoid that extra year:-)
Sofia's in her last year of Elementary School.
I fell in love...again.
2012 is just zipping right along.
And while we are constantly evolving, crepes with Nutella accompanies our growth (in all senses).

In two weeks I'll be "teaching" my first parental support course. One of the parental association presidents asked me to meet with two different groups. In the morning, I have a group of 20 teens, and in the afternoon a group of parents and grandparents. The teens will be watching the children duing the meeting with the parents.

In the past five years I've collected a lot of information. I've been concentrating on the medical community and trying to offer refresher courses so that they would know how to help the families of children with hearing loss in their journeys. I've been invited to medical congresses, so that now I have access to all current information in the field.

But what it all comes down to in the end is still my experience with Jordan.
That's what I'll be bringing to that course.
And I hope to close some gaps for the parents and motivate the adolescents.

Any suggestions?
If you've been to a parental support course, what made the greatest impact on you?