Jordan's first IEP meeting...

We had Jordan's bi-annual IEP meeting yesterday and for the first time since he started school at age 3, he participated.
After asking the CI Circle parents their experiences regarding allowing their children to participate in the meetings, I realized that in the USA it's common for children to participate; however, after asking a group of speech therapists at a course where I spoke in Pisa last Saturday, I realized that in Italy, it just doesn't happen.
Yesterday in Grosseto, it happened.
At an IEP meeting the parents, teachers and child psychiatrist are present. We've known the child psychiatrist since Jordan was three and he has been a fundamental part of our journey.
He smiled the entire meeting.
The teachers smiled the entire meeting.
Jordan talked about how he thought school was going.
The teachers asked him questions about what they could do to help and what his concerns were.
They told me that he participated regularly in class and followed the lessons attentively.
Everything went really well, except for the fact that he's failing English.
Smile.

Adrenaline

Some people jump from an airplane and feel the rush at the moment they tug the cord of the parachute.
Some people step in front of a podium, microphone in hand.
Some girls put on a tutu while others run the bases until they touch home plate.
When you're a sixteen year old guy, it can be the girls putting on makeup at the back of the classroom or the smell of perfume.
It can be that moment where you find the courage to speak, when you are unsure of exactly what may come out of your mouth.

It comes in all shapes and forms at any age.
If you aren't sweating, you aren't living.
Sometimes we are standing on the edge of "right" or ""wrong", "up" or "down", "do" or "don't".
And if you've gone as far as that edge, don't look back.
Just jump.

Bye Mishka:-)

"Last week i took down my blog down for good. It's been inactive for some time, but now it's gone. I've saved all the posts. some day I will donate them to a deaf studies program. blogging had been an enriching experience. I've gained invaluable information and formed countless friendships. while looking at posts since 2006, I can safely say that my perspectives on certain issues have changed since I began blogging.

...I'm not ruling out the possibility of resuming blogging and deaf advocacy again later on."


The end of an era.
I totally understand.
Mishka's blog taught me a great deal and gave me many opportunities to reflect on the choices I made as a Mom during that time period. She gave me an education that I am still using today...actually the other day on the Italian forum I spoke about my experience blogging on Deafread and how our constructive dialogue led to an evolution in attitudes.

Five years ago I began blogging, I was married, in crisis and alone. It's incredible how writing and putting your heart out there for everyone to read can help you understand yourself and help you work through making choices. It's amazing how many people are living what you are living, or something similar at that precise moment and how many people you can touch just by sharing some pain. 

I have learned that the more you give, the more you grow.
We're still here growing in Tuscany.
I'll be back soon.

I love my son

I wish that I could give him my assertiveness to lend him the strength that he would need at that specific moment where he lowers his head to look insecurity in the eyes.
For just that precise moment when he chooses to ignore or shake his head and suffer in silence, because HE knows right from wrong but the asshole in front of him does not.
Only five minutes with my journey of indignation to give voice to that forced growth process that he is now enduring.
Another dumb-ass ignorant kid with probably a lot worse of life than my son has had to live, who takes it upon himself to make fun of my son who is only trying to go to school and laugh.
An hour in the Principal's office, an hour of explaining what needs to be done. One of the teacher's said, "I can't believe that, I have not seen that, etc. Wait, I do remember a couple of weeks ago the Italian teacher wanted to see him and his classmate went to tell him that the teacher was looking for him. But Jordan didn't believe him. He thought his classmate was playing a joke on him. But the Italian teacher really was looking for him."
Well now, I guess that confirms what we've been saying. NOW WHY WOULDN'T JORDAN TRUST HIS CLASSMATE AND GO DIRECTLY TO THE TEACHER?

Another sleepless night.

By the way, they weren't convinced until my companion stood up in front of the Principal and said, "We have been talking about this problem for the past 50 minutes and we never even discussed how the two boys have been harassing Jordan."
Dino stood up, looked them in the eyes and said: "Wwwwwwwwwwwhat ddiiiiiiiiiiid youuuuuuuuuuuu sayyyyyyyyyyyyyyyyyyy?"
You know, in that way that a hearing person makes fun of a deaf kid.
They stopped looking for excuses.
We'll see what happens next.

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.

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."

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.