Monday, July 16, 2012

15 Years Later...Jordan's Journey Led to Dr. Niparko at Hopkins

Two months ago I participated in the Family Centered Early Intervention Congress in Bad Ischl, Austria, where after 15 years of Jordan's journey in Italy, I had the fortune of meeting Dr. John Niparko. We were part of the same International Consensus Meeting on Family Centered Intervention. Actually, I sat next to him.
Who would have ever thought that the girl from Baltimore would meet the world famous CI surgeon of Hopkins at a Congress in Austria?
I grilled him with questions during that Congress, we talked about bilateral cis, an Italian situation, how early he implants, how long before totally implantables would become available and hair cell research so that I could take the information back to my Italian forum. He calmly answered all of my questions despite his jetlag and was absolutely the nicest person to have waited fifteen years to meet.

Okay, here's the deal.
I have created a network in Italy. I place families in contact with Italian surgeons on a regular basis. They ask me for help and I am so happy to be in a position to help them.
Dr. Niparko gave me his email address during the meeting and told me if I had any questions that he would be happy to answer them, but that I might have to wait for a response due to his busy schedule.

I arrived in Baltimore three weeks ago.
Jordan's journey has been exclusively Italian. We have always trusted our doctors in Pisa, but I had Niparko's email address burning a hole in my wallet.
What would you have done as a good American mom living in Italy with a world famous CI surgeon twenty minutes from your house?
My son's hearing is the most important thing. We just upgraded to a CP810 and he seemed to be talking louder than usual.
I sent the email.
Niparko responded.

We just spent the day getting mapped and taking a tour of The Listening Center.

Dr. Andrea Marlowe mapped Jordan.

She said his Italian mapping was very good and she just tweaked a couple of things that have improved Jordan's quality of hearing. She talked us through the entire process; Jordan did the Ling sounds without missing one and repeated some words in English without any problems.
An amazing experience after having lived every moment prior in Italian.
My mom came with us and after 15 years, she was finally able to ask questions to a Doctor (THE Doctor) who spoke English.

Dr. Niparko shook hands with Jordan, showed us around the Listening Center, answered my Mom's questions and told Sofia she was beautiful. He handed me the Listening Center information packet that I'm going to study and I showed him the Pediatric Cochlear Implant Circle yahoo support group;-)...been waiting four years to be able to do that.

I'm still kind of emotional about the whole thing.
You never know the places you'll go. You just always want the best for your child.
I am thankful for Italy, and I am thankful for Niparko.
I am blessed.

Friday, July 13, 2012

The Miracle of Disney

Once upon a time on the Pediatric Cochlear Implant Circle a Mom asked whether or not people on the forum request the "Disability Pass" at Walt Disney Theme Parks.
My reply was no. The issue was whether or not I considered Jordan as disabled, and I've never considered Jordan to be anything other than Jordan with a hearing loss.

My dad and I decided to take the kids to Disney, we'd been planning and saving to be able to do so. The big day was getting closer and I couldn't decide between Animal Kingdom or Hollywood Studios, so I made the classic Facebook appeal. The consensus was for Hollywood Studios and during the thread, Paula suggested that I inform myself once at the Park regarding cc services available. She didn't say, "Go get the Disney Disability Pass!" She said, "They have excellent services available that will improve Jordan's experience at the Park."

So I did just that.

I walked into Guest Relations at Hollywood Studios and I explained that Jordan has a hearing loss, that I'd heard Disney has captioning available on rides and shows, could he please advise me. Justin was extremely nice, happy, a pleasure and a half to speak to. He pulled out a "Guide for Guests with Disabilities" that was the same map as the one they give out in the park, only next to each ride and show was indicated what type of captioning was available. He explained:

Assistive Listening: utilizes Disney's Handheld Device to amplify sound through headphones or induction loop at specific attractions. Devices are recommended for Guests with mild to moderate hearing loss. Available at Guest Relations and require a $25 refundable deposit (must return item on same day for refund).

Reflective Captioning: (didn't work in the only place we tried it, but they were so nice to set it up in a front row seat) Available at many theater-type attractions, utilizing an LED display to project desired captions onto an acrylic panel positioned in front of you.

Handheld Captioning: (we used this often in Hollywood Studios, less in Magic Kingdom) Utilizes Disney's Handheld Device to display text in locations such as moving attractions. Available at Guest Relatoins and requires a $25 refundable deposit.

Video Captioning: Caption-ready monitors are designated with a "CC" (The Toy-Story Ride had this option) symbol and can only be activated by remote control.

Written aids: (At one of the shows, they asked us if we needed a script of the performance) Guest Assistance Packets containing dialogue, narrations, flashlights and pen and paper are available at or near the performance areas or entrances for most shows and attractions.

Telephones: Pay phones equipped with Text Typewriteers (TTYs) are available at designated locatoins throughout the parks.

I gave Justin my $25 deposit and he handed me a "Guest Assistance Card". The Guest Assistance Card enabled us to use an alternate attraction entrance where available and to sit in the front row of theaters or ride vehicles where applicable. Basically, we used the fast pass lane for all attractions.

We used the card.
And that made all the difference.

When I got the handheld captioning captioner and the card, I explained to Jordan that these were services that Disney made available to him because of his hearing loss, so that he could enjoy the Park at the highest level possible.
He smiled this amazing smile, a totally satisfied smile.

I'm going to write this here, because it was such a bizarre sensation. At one of the rides, I can't remember which one, we actually entered a disability line and we passed in front of the non-disability line. Our line was filled with wheelchairs and families pushing those wheelchairs. I glanced at the really slow moving line as ours pushed ahead and for some reason, there was justice in the world at that precise moment. I actually got a little choked up.
It was reverse justice. Like things were finally EASY for us and difficult for everyone else. I've never had that sensation of self-pity or why us-ness, but the difference in accessibility at that precise moment was switched. And I felt it.

We kind of did another thing that was probably totally illegal and unacceptable.
I don't do roller-coasters or stomach-drop-through-your-mouth types of things.
Jordan does.
So, I would accompany him to the front of the line to get on the ride. We found an amazing Mexican baseball team his age, and he made friends with them during the line. Our pass allowed four people to get on a ride with Jordan, so we kind of offered another ride to three of the team for the next three rides.
Yep...making memories:-)

Thank you, Disney....