For ten and a half years I did not know that yahoo groups existed. The last nine months of reading and sending messages, exchanging information with other parents living my same experience at different points of the journey has made me a stronger and better mother. Yesterday, we went to Pisa for Jordan's second mapping of the NUCLEUS FREEDOM. We sat down at the table: the audiologist with her computer, Jordan next to her, Luca behind Jordan and I was seated across from the audiologist. After hooking his processor up to the computer, she began making adjustments, but she didn't ask specific questions and I started getting antsy. Do I open my big, fat mouth or stay silent and let her do her job? Well, I am just not a patient person and my kid's hearing was at stake, so of course my aggressive self took over and I began firing questions. Another important aspect is to know your kid, observe him and his behavior, obviously that was the main reason I started collaborating with the audiologist. We worked on adjusting the level of background noise, by concentrating on sounds in the room like the fan, "Jordan, is the fan loud or soft?" "Is my voice louder or softer than the fan?" "Can you hear your own voice?" "Is it louder or softer than my voice?" etc. Then, I asked her if she did the Ling Test? She said she didn't know what the Ling Test was, I thought maybe it was an American thing, so I asked her to repeat some consonants and vowel sounds. She began going through the consonants like this: "ABBA- AKKA-ADDA-ALLA-ASSA" but when the consonant is attached to the vowel "A" it's easier for Jordan to distinguish as opposed to when the consonant is alone or attached to the "ee" sound. So, I started in an I'm-really-not-trying-to-do-your-job way, more like an I'm-a-proud-member-of-the-Pediatric-Cochlear-Implant-Circle-and-I'm-informed kind of way to do some Ling testing that you can see here with Nicole: To watch video either double click to go to youtube or deactivate music on the upper righthand side of the page
BECAUSE ANOTHER MOM FROM THE CI CIRCLE HAD SENT ME THIS VIDEO! AND ALSO BECAUSE I HAD SEEN ABBIE'S VIDEO OF HER ACTIVATION AND THE QUESTIONS THAT HER AUDIOLOGIST HAD FIRED ONE AFTER ANOTHER AT HER!
THANKS AGAIN, ABBIE, YOUR VIDEO HELPED MY SON! At the conclusion of the mapping I asked the audiologist if she had made a lot of significant changes in respect to the old one, and her response was, "Yes." We also made certain that the volume feature was adjustable for those "extra-loud" school days. The FREEDOM PROCESSOR allows for four maps. P1 is his base map, P2 uses the AUTOSENSITIVITY PROGRAM, P3 ADRO and P4 is the base map on a higher level. She allowed me to download the new maps on my husbands computer key-drive (whatever you call that thing) that he obsessively carries with him, thank God! I like having copies of Jordan's maps just in case. We said our goodbyes and headed for the Leaning Tower of Pisa. Given that the hospital is a three minute walk from the Tower and I spent a lot of time there breathing during Jordan's surgery, I kind of always have to visit Piazza dei Miracoli (Miracles Square- highly appropriate) every time we go for an audiological visit. Jordan got a foot long hot dog, had the man cut it in half because he only wanted mayonnaise on half of the dog and nothing on the other half and a can of peach tea. I watched all of the Japanese tourists-not many Americans-doing the typical Leaning Tower of Pisa pose where they contort their bodies and arms to make it look like they're holding up the Tower from falling, one of the most hysterical things ever seen and consistently reproduced!
...I am grateful that I finally accepted that I am deaf, it is a part of who I am. I am grateful for the experience of total silence; it made me a better person by turning off the music of the daily hustle and bustle of life forcing me to put things in perspective. I am grateful for my family who supported me every step of the way especially those who were my ears when I had nothing to give back. I am grateful for being blessed with the perfect pooch. She is my ears when I am sleeping. She never leaves my side. She accepts me as I am and leaves all my hardware alone. I am grateful for my friends who were always concerned but never once pitying me and always willing to help me. I am grateful for the people I have met who are just like me. They opened my eyes making me realizing that I am not the only one walking this earth without hearing the crunch of the grass give way underneath my feet. I am grateful that I have a awesome audiologist who listens to me. I am grateful for everything that I have seen, touched, smelted, tasted and heard for it serves a higher purpose. I am grateful for the men, women, and children that walk in and out my life opening doors to new things. Most of all, I am just plain grateful for being chosen for this opportunity to wade through life being me...
HOW BEAUTIFUL IS ABBIE!?!! (BTW, a full set (of acrylics) in Grosseto costs minimum 90 euros - crazy!) Aside from this, the audiologist on - but not seen in- this video taught me a great deal about mapping and mapping strategies. She shot specific question after question at Abbie allowing for some fine tuning of Abbie's map. It's almost ten here, but as soon as I have a minute, I plan on writing a list of questions asked by the audiologist as well as her explanation of the three mapping modes - that I never knew existed...I did not know that for small children the surgeon could perform an ABR during surgery to test the cochlear implant and predict a map based on nerve responses...AMAZING! Although now that I'm thinking about it, I vaguely remember the surgeon telling me they tested the implant while Jordan was under and that it worked...but I did not realize that an ABR performed during the surgery could create a map! Not all audiologists are created equally, hats off to Abbie's and thanks to Abbie for allowing me to post this. (Abbie is a member of the yahoo support group CI HEAR)
-------------------------------MORE JOSH SWILLER-------------------- SHARON PAJKA-WEST PHD. THE AUTHOR OF THE BLOG: DEAF CHARACTERS IN ADOLESCENT LITERATURE (LIVE FOR HER INTERVIEWS!) JUST BLOGGED ABOUT JOSH SWILLER'S APPEARANCE AT GALLAUDET YESTERDAY...CHECK IT OUT! (I'M SUCH A FAN!)
