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suzcohen last won the day on December 12 2017

suzcohen had the most liked content!

About suzcohen

  • Rank
  • Birthday 05/01/1969

Profile Info

  • Search Profile
    Parent of a hearing implant user
  • Implanted
  • Implant Period
    Over 5 years
  • Implant Type
    Cochlear Implant
  • Hearing Loss Type
  • Cause of Hearing Loss
  • Pre/post lingual Hearing Loss
    Pre lingual Hearing Loss
  • Sudden/Progressive Hearing Loss
    Progressive Hearing Loss
  • Uni/bilateral Implant
    Bilateral implant
  • Country
    United States

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  1. I second all the advice that Mary Beth has given you. That's wonderful that you will be making another visit to Turkey to check on your son's speech processor's MAP. As she mentioned, it often takes several sessions to ensure that your child can hear all the speech sounds. I also like the targeted auditory practice that Mary Beth suggested. Here is another idea for you as you go about your daily activities: "Narrate the news." Our auditory-verbal therapist suggested we "narrate the news," all day, every day. What she meant by that was pointing out and commenting on everything in our child's world. For example, as I carried him as a toddler around in my arms, I pointed out pictures on the wall, commenting on who and what was in the pictures, the colors in the pictures, the colors of the walls, the appliances in our kitchen, the furniture in the house, the items we saw when we traveled. She explained that deaf children need to hear everything many more times than hearing children to associate meaning to them and to learn to hear them. At first, I was really pointing out one word at a time. Baby. See the baby in the photo. Blue. Look at the blue shirt on the baby. Baby. This "narrate the news" strategy can be used to explain to your child what you're doing as well. I'm picking you up. Up, up, UP! I'm picking out a blue shirt for you to wear. Let's put it on, over your head. Let's put each arm into the sleeve....etc... Or to let your child know what's happening next. We're going to go buy food for dinner. We will need to get our shopping bag. Now, we need to find our shoes and put them. And eventually to help them start planning and exploring Theory of Mind-what other people think. We will be hungry tonight. What food should we buy for dinner. What food do you think mommy would like? I think she might be hungry for X because it's her favorite food. Shall we pick up some X for her? Do you think that will make her happy? It can seem exhausting at first, but you get used to saying everything you are noticing, doing and thinking, but it's a great way for your son to learn vocabulary and eventually Theory of Mind. I'm excited to hear that you will revisit your audiologist in Turkey and wish the best for you and your son on his listening journey! Take Care, Suzanne (mom to 16-year Max, bilateral CI recipient)
  2. @ZekariasWelcome! Our son received his first Med-El CI when he was 1 year too. As others have mentioned, some audiologists start out with really low volume for children who are newly activated. When you go in on the 26th, if you determine that is case with your audiologist, definitely share his reactions and your concerns. Maybe jot down a few notes that will help the audiologist understand if your son is responding when you speak to him from behind, if you bang a pot from behind, if he looks up to your voice or a banging pot when your 10' in front of him vs. if your 3' in front of him, etc. If the audiologist is only giving him small amounts of sound at each visit, you might want to ask if they can program 4 options with increasing volume so that you can continually add volume every few days before the next audiologist appointment. In addition to seeing our audiologist frequently when our son was an infant, we also had weekly "auditory rehab" / "auditory-verbal therapy" appointments with therapist at our CI center to help train our son to learn to listen and distinguish sounds. We also received weekly visits through a US "0 to 3" high risk early intervention service...where the specialist would come to our house and teach us how to draw our son's attention to sound, work on distinguishing different sounds (google "Ling sounds"), and basically find ways to build language into every day activities you do with your little one. Those therapists can help you access the quality / volume of sound that your son is hearing as he continues on his hearing journey. Probably your first step would be talking with the audiologist and finding out their plan and sharing your goals with them to assure they are aligned. Our audiologist actually gave our son full volume on our first programming appointment, slowly increasing volume until his eyes "blinked" which she indicated meant the sound was too loud. She banged on her metal filing cabinet to see him startle and ensure the banging was not causing the eye twitching which would indicate she had raised the volume too much for him at his listening stage. Each child is different; our son progressively lost his hearing over his first year so he had some exposure to sound whereas some kids who have been profoundly deaf since birth, find "full volume" too much on their CI as they adjust to the new input. Each child is different and each audiologist has their own method, so ask a lot of questions and share your concerns. We will be looking forward to hearing about your appointment on the 26th and about other questions that arise as you and your son begin this magical "hearing journey"! Take Care, Suzanne (mom to Max, 15-year old bilateral CI recipient)
  3. @Rashmi Congratulations! I can't wait to hear how activation goes! Such an exciting time for your child and your family. Take Care, Suzanne
  4. @Mary Beth He used to use the Roger X receivers, but he received the Roger 21 receivers recently and loves how sleek they are. He also upgraded to the Roger Touchscreen in school and reports that speech is much clearer with the new combined Touchscreen/Roger 21 receiver system. He loves it. He has not used the Roger system outside of school with any regularity. He just got a Roger Pen so is starting to try it outside of the classroom and will hopefully find situations where it is helpful soon.
  5. @Mary BethMy son does not use the rechargeable batteries regularly as they don't make it through his school day using the Roger system, so we don't have any intel on battery degradation.
  6. @Mary Beth Max met Doug Baldwin #89, a wide receiver, and he got to play Madden football on Xbox with him! What a kind, genuine and articulate young man. Go Seahawks! And go Packers!
  7. Congratulations on giving your child the gift of hearing! As Mary Beth and others have said, you can't go wrong with Sonnets or Rondos. My son was implanted with MED-EL as a 1-year old as well; the MED-EL external speech processors have progressed so much since our son was implanted 14 years ago. Now, as a teenager, my 15-year old prefers the sound quality of the Sonnet (as has the ability to do slightly more advanced automatic sound management with two microphones); additionally, he uses a FM system at school which couples more efficiently with the Sonnet. Many audiologists don't recommend a FM system until the child is two or three years old. Finally, the RONDO, while amazing technology and so simple as a Single Unit Processor, is quite heavy and is too easily knocked off my son's head as an active teen who is constantly in motion, playing sports and wrestling with his older brother. For an infant, I think both processors are great. We used the "Baby BTE" configuration of a processor that looks much like the Sonnet with our son when he was a baby. We secured the processor to the shoulder of his clothing until his ear grew large and sturdy enough to have the Behind-the-Ear Sonnet-like processor at ear level. I think you have two great options and encourage you to talk more with your audiologist to determine what might be the best fit for your child now, next year and up until the time when you will be eligible for an upgrade. On a totally different note, my son had the opportunity to meet and talk with a player from our local football team, the Seattle Seahawks. You should have seen me tear up, watching my deaf teen not only meet and hold his own talking with a professional NFL football player, but participate in an interview with 15 different microphones and cameras aimed at him. He said today, and has said in the past, that he is so grateful that we chose to give him MED-EL cochlear implants. You are giving your son the gift of a lifetime. I'm so excited to hear more from you as you, your son, and your family start this incredible process. Best of luck to you, Suzanne Cohen (mom to Max, bilateral Sonnet 15-year old recipient)
  8. Hi Mary Beth! I made it! Always great to see you too. Now I just have to figure how to navigate around! Take Care, Suzanne
  9. My 15-year old son was born with a progressive hearing loss and was profoundly deaf by age one. We did decide cochlear implants were the right choice for our family, and he received his first implant at age 1 and second at age 4.5. Ideally, we would have implanted both sides when he was one (because it's ideal to get sound to their brains while their neural pathways are forming to interpret and make speech and oral language meaningful), but surgeons wouldn't bilaterally implant children back then. It was most gratifying to hear my teenage son share with me this year that he is so grateful that we went this route. He's an outgoing, talkative, positive kid, who plays high school basketball and lacrosse, and is able to independently navigate communication. We even let him fly home from a camp for the oral deaf by himself this year....and he was beyond proud of himself for being responsible enough to do that. While there are no guarantees, I've never met a deaf person with a cochlear implant who regrets their decision to implant. Even if your child had an unusual experience and wasn't able to access speech, the chance to hear environmental sounds (ie. know when a fire truck is coming) allows your child the independence to walk to the park alone when age appropriate. Most kids do very well with them, particularly if they work hard at aural rehab as Mary Beth mentioned. It will be important to find support for him to hear and access sounds.....many "birth to three" programs in states can connect you with a program for "oral deaf" children, which might allow you meet other families who've been in your position. I know that when my husband and I met a teen with CIs, when we were making our decision to implant our infant, it brought clarity to us. We wanted our child to be able to speak and talk to adults like this eloquent teenager did with us....we wanted to give our child the gift of sound, speech, communication and independence and his cochlear implants and lots of aural rehab have enabled that. Best of luck as you explore your options for your child. I hope you are able to connect with some local families and meet their children with CIs and see if it's the direction you want to fight for your 2-year daughter. Take Care, Suzanne
  10. My 10-year old bilateral Med El CI user has always used the direct connect cables provided to plug into his IPod and laptop computers (sometimes with a splitter cable and two direct connect cables, but usually just one as the two cables seem cumbersome and start getting caught on things); however, we were always concerned with allowing him to plug into a computer that was plugged into a wall. I recently heard a lecture by Med El on assistive devices and it opened up my eyes to many other possibilities and we just purchased a neck loop for him to try. Currently the Med El CIs do not have blue tooth compatibility, so we bought the Bluetooth Amplified Neckloop-CLS-QUATTRO by Clear Sounds and a CLEAR SOUNDS CS-QLINK Stereo TV Transmitter/Bluetooth Dongle that was recommended by another Med El CI user. It works great with cell phones, IPods and t.v.s. You plug the dongle into the t.v. where it emits a blue tooth signal; then the CI user switches to "T-coil" mode and puts on the bluetooth neck loop and picks up the bluetooth signal through both CIs. My son raved about this set-up--likes the bilateral listening condition too. Usually, I find him turning off his CIs and just reading the captions, but not with this set-up! He thought it very funny that he could leave the room to go to the bathroom and still hear his show. He can also plug the dongle into a computer or his iPod, wearing the neckloop and move around the house listening to his music. With the t.v.s, one caution: on one of our t.v.s, plugging in the dongle mutes the sound for everyone else in the room, but on the other t.v., the rest of the family can still hear it....haven't figured that all out yet as this is brand new to us. Another cool thing about this particular neck loop is that is has a headphone port at the base of the device....you can plug your Med El direct connect cable into that and plug your IPod in that way too. Just learned from a sound engineer at a Cirque du Soleil performance that you can also plug the direct connect cable/neckloop combo into the devices they hand out for hearing impaired people at theaters (the ones that usually have head phones attached that CI users can't use). This particular neck loop is kind of pricey as it also has a microphone so you can use it on the phone. There are cheaper versions without the microphone you speak into and without blue tooth compatibility. The cheapest alternative is probably using two of the direct connect cables with a Y-splitter cable. Hope that helps! Suzanne (mom to Max)
  11. My 10-year old son has bilateral Med El CIs, and he prefers using his electric toothbrush (to a regular one). He's never indicated that it bothers him in any way....and in fact brushes longer using the electric one! Hope that helps, Suzanne
  12. I learned so much from Jeff's Hands on Hearing presentation. My son Max(10 years old, bilateral Med El user) now loves to listen to t.v. using a t-coil Quattro with a Q-link dongle that Jeff showed us how to set up; previously, my son preferred to watch t.v. with the sound off, only reading the captions. I also learned some great ideas for helping Max hear at movie theaters and for live theater productions. Technology is amazing....try to go to one of these presentations if you have the opportunity!
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