Information for parents, professionals and adults with ANSD



Starting School

August 1, 1999--We have been busy all summer with swimming pool visits. Jake loves to go to the pool and asks everyday, "Jake go swimming pool, okay?" Other than that we have been practicing speech, articulation goals and Kindergarten skills getting ready to go to big school in a few weeks.

August 14. 1999--Jake's six month evaluation. Thresholds are between 15-30dB on the audiogram. He showed progress on the Paden Brown Battery of 2-7% but after that it was downhill with the testing. He scored slightly lower on the ESP and PBK because he wouldn't cooperate no matter what we promised or threatened him with. Typical Jake!
His SAT was 15dB

August 16, 1999--Today was a traumatic day, more for me than Jake. I have tried to tell him he was going to BIG school, I even took him there and went in the front but couldn't tour due to remodeling. We got a new cord for the processor because the one we were using was looking worn and I wanted him to be sure he heard everything. So off we go this morning, he gets all upset when we pass right by his old preschool building. He was yelling, "Mommy, turn, turn." We get to the school and I could see it on his face that he wanted to get the heck outta there. I took him to the HI classroom to see his transliterator. Luckily, she was with him at preschool as a teacher assistant. He was okay, sorta, but very clingy and saying "Go bye bye, Go bye bye". I get teary eyed because I see his fear and of course, he picked up on that. His mainstream teacher took him and started to lead him to the room and he grabbed my leg so hard I almost fell. BOY, can he scream loud. Poor baby was screaming, "No, wait Mommy, wait....NO, I said NO!!!" About that time he is kicking and hitting at the teacher and I am trying to get out of his site because they assure me he will be fine when I am gone. His headpiece fell off and was beeping in the distance as I hurriedly scrambled out of site. Then I hear his transliterator calling my name and here she comes with the microphone and part of the cord from the CI. He somehow got a hold on it and ripped it half into. So I had to drive all the way back home and get another cord and return to the school with it so he could hear. At least he had his hearing aid as back up. Now here I am traumatized, feeling so mean and helpless because I abandoned my baby at a strange school with strange people and to top it off he was without his CI for about an hour. When I got back and he was playing with the teacher and being tested. He was having a ball! I was so relieved, I had expected to get back with him in the office with handcuffs on! He wound up doing fine. He won't go back till Monday and I bet we will go through this again. Also, he called his transliterator Leighann at preschool and now he can't understand why he has to call her Ms. Stone. His preschool mainstream transliterator is also at this school now since the Cued Speech Preschool program closed, so I hope since he knows some of these people he will be okay. I am severely baby is in big school!!!!!

up a tree September 2, 1999--After a lot of thought and conversation with parents of children with Auditory Neuropathy that were like us, isolated from anyone else with an AN child, I have decided to start an email list! Dr. Berlin has agreed to be my professional contact.

September 3, 1999-- The email list is up and running as of yesterday! A few of my online connections have joined today. I can't wait to see the list grow. I hope that it is beneficial to many parents of AN kids.

September 10, 1999--Jake is settling into school and stays without complaints after the first week. He seems to like the kids and learning because he cries if they are out for a day and even asks to go on the weekends.

One of my favorites  September 24, 1999--Jake had an IEP addendum yesterday to increase speech services and mainstream time. He is down to three hours of resource time now. I found out that the SLP is only responsible for articulation with Jake in the public school system here. I did get it increased from two sessions a week to three at thirty minutes each. I was hoping for forty-five minutes slots three times but knowing my hyper little boy as I do I know that forty-five minutes of articulation drills and he would be bouncing around the room. The SLP is doing great with him anyway, he has started to get the 'f' at the beginning of words! His 'l' in the final and middle position are coming along well and he is doing the 'p' and 'b' in all positions much better. I really like his HI teacher and feel confident she is very capable of doing the auditions goals. The good thing is that Jake likes them both, thank goodness. :)

October 2, 1999-- Today Jake got on the phone and told me he wanted a cheeseburger! All the right sounds in all the right places!!!!! that cool or what? For a while I have been trying to get him to at least say his first name when I ask him "What is your name?" Now when I ask he will say "My name is Jake!" I love it!

October 7, 1999--Jake is so proud to learn words like rectangle (tetantul) and triangle (tritantul). His new word yesterday was octagon (oktuhton)!

October 19, 1999--Jake frequently brings tears to my eyes with his speech production and increased social skills since the implant. Today he rolled the car window down and was trying to talk to people stuck in traffic with us! This from a kid that NEVER spoke to anyone except us, his neighborhood playmates (very little to them) and his teachers. You had to almost pull the words out of his mouth and you still couldn't understand much of it if you didn't hear him talk a lot because he talked in a low voice. He is looking at books and making up stories as he goes by the pictures he sees. He is using language scattered up to Phase 6 and 7 from the "Bloom and Lahey" language chart, when he had only been to around level 3 before implantation. From "Which One?" to "Which one is it Mommy?".......From "What doing?" to "What that man doing (in) tree."

November 11, 1999--Nine month evaluation was today. Jake was not really cooperative. We got an audiogram, but that is about it. I don't know how reliable it is either.
30dB at250Hz
20dB at 500Hz
20dB at 1000Hz
20dB at 200Hz
40dB at 3000Hz
35dB at4000Hz
40dB at 4000Hz
SAT at 10dB

 November 17, 1999--I am sometimes overwhelmed with the progress Jake has made since implantation. Last night he came in the room fussing up a storm. He said as clear as a bell,"Mom, Joshua hurt me, bad boy!" He said hurt with the 'r' and the 't' sound! I was SO excited. He is now telling me what to say when he does his articulation targets well. I said "Good job" but he corrected me and said, "No Mom, you say very good Jacob." Before the CI you were lucky to get a two-three word utterance out of him and then you couldn't always understand it. He is beginning to enjoy music on the radio more and asking to have the radio on in the car. I never thought I would see that day! I waited so long for something good to happen in his language acquisition and finally it is happening. I'm glad I took the chance and had him implanted.

November 28, 1999--This is my first birthday that Jake was able to sing most of the Happy Birthday song to me! Music to my ears, even though it is just a bit off key.

December 10, 1999--I just realized that this is the first Christmas that my precious Jake will actually hear the sounds of Christmas. The jingle bells, the fire crackling as it burns, Christmas carols, Santa saying HoHoHo and so many other things he has never heard before. In the last 10 months, he has experienced so many sounds that I never thought he would hear. Things like hearing bacon frying on the stove last night, the "welcome, you've got mail" message on AOL from the other room. He is very interested in music and wants the radio on in the car now since his last mapping, before he absolutely hated the radio on so I kept it off when he was in the car with me. And last week he was singing along with the radio to a song he has surely never heard, but he picked it up and was singing "come uh, come uh, come uh, come uh, come come, yeah yeah yeah". He is singing "Jingle bells, Jingle bells, jingle all the way" over and over lately. It isn't very good singing but it is absolutely music to my ears!

Jake at Christmas 1999, his first hearing Christmas!December 25, 1999--Jake's first Christmas with his new hearing was great! He got a train track set and loves to hear the noise it makes. He couldn't figure out what the sound of tearing wrapping paper was for the longest. I didn't know what he was talking about until he realized what it was as he ripped open a package. He clung to his Papaw and talked up a storm to him. He is a real Papaw's boy, for sure. The really odd thing is that before he was implanted he was terrified of my Dad. I thought it was because he is six feet, four inches tall and looked so big to him, but as soon as he could hear he was fine around him. Maybe he was afraid of what he couldn't hear?

December 29, 1999--Jake still responds at times without his implant or hearing aid on. Tonight he was getting ready for bed and had no equipment on. I said in a normal voice "Jake". From the other room he answered me "What Mom?" It really freaks me out at times. I wonder if they will ever figure out how these kids do this???

December 31, 1999--It still amazes me that fireworks aren't too loud for him with the implant on. They are too loud to me, but he doesn't flinch.


 puppy named cricketJanuary 4, 2000-- Jake got a puppy from his Grandma and is telling everybody it's name, Cricket. He is 6 years oldpronouncing it correctly too! He said, "Cricket go boing, boing, boing...him funny Mommy." That is where the name comes from, the bouncing around! He is tiny, only 14 ounces so Jake keeps saying he is too small and telling everyone to be careful.

 January 10, 2000--Jake was so proud to be 6 years old today and this is the first time he ever really heard the Happy Birthday song, which was pretty exciting for Mom and Dad! Doesn't seem like it has been almost a year since he got his implant, but February will be a year.

January 17th, 2000--Jake is very confused, his puppy died on the 14th after a very unfortunate accident and he cried his eyes out. My father died last night and Jake can't understand why Papaw is gone too. I told him that Cricket needed someone to take care of him in heaven and he seemed to be okay with that. But, I know he really doesn't understand. Times like these make you realize just how far we still have to go with language issues.

 Snow is COLD January 28, 2000--Jake was a real Papaw's boy and can't understand that he is gone. It is kinda funny though because we keep telling him he went up to heaven way up there in the sky. He knows where Mississippi is on the map and tonight he pointed at Mississippi and said, "Lulu down there," then pointed at Canada and said, "Papaw up there in heaven." There is no convincing him that he is wrong, but it was funny. A much needed laugh around here. We have been snowed in with 24 inches and had no school for almost two weeks, but the end is in sight!

February 2000--Not much this month other than school. Jake is working hard on basic skills and is catching up slowly but surely. He is making friends and is very popular among his classmates. He is mainstreamed for four hours a day now. He had his one-year post implant evaluations and scored well on the testing. He is consistently hearing at the 25dB across the board. His Paden-Brown Battery scores were:
Word Patterns 98.5%
Syllables 100%
Stress/Intonation 100%
Initial Consonants 100%
Final Consonants 94% he left the "n" off the word balloon
Vowels 95%
Diphthongs 100%
Consonant Place 78% was problems with "l" and "r"
Consonant Manner 80% was also problems with "l" and "r"
On the Early Speech perception testing he scored as follows:
Pattern Perception-Stress100% and Word 100%.
Word Identification-Spondee 85% and Monosyllable 93%.
The PBK-50 was not done due to fatigue and will be done at a later date

March 1, 2000--Jake has been able to answer to his name on the phone since the first few weeks of activation and repeat Lulu and Papaw back to my parents. He could recognize certain voices but not really understand unless they were on speaker phone. The speaker phone is how I started him practicing with listening over the phone. He moved up to answering yes and no to simple questions but usually only when my Dad talked to him. He would hear my Dad say "Hey man, what ya doin'?" and respond "okay papaw," "hi papaw" and that kind of thing. He has been lost since my Dad died and is always asking "Is that Papaw?" when you are on the phone. Well, tonight a friend of mine called and he talked on the phone to her! He answered, "uh huh, dentist fix tooth" "no, not hurt" He kept saying that I was in trouble and when she said what did you say Jake, he replied "Listen! Mommy in big trouble (for) talk on telephone". I was so excited. This is a person he has never spoken to! The thing is that he always wants to talk on the cordless phone and tonight he was on a regular phone and he understood a lot more. Once he put the phone to his aided ear and said "Wait, not hear you, (with) hearing aid" He changed back to the CI side and answered the question! I thought this was cool and his Dad wasn't home to see it, rats!

March 26, 2000--Okay, this auditory neuropathy is such a puzzling problem. Once again, I have been blown away because Jake responded to me without his CI. This is probably the most obvious "hearing moment" that he has ever had since his residual hearing has decreased. I slept in yesterday and when I got up Josh and Jake were headed out the door to play (Dad was outside). I noticed that Jake only had on a shirt and underwear and not shorts. I went to the door and called his name and he answered "What Mom?" and I said that he needed to come get his short pants on. He said "okay, I coming." He was in the garage, about 40 feet from me and we couldn't see each other. As I turned to walk back into the house I saw his IMPLANT and HEARING AID were still in the dry pack!!!! I ran back to the door and yelled at my husband "Did you hear that?" to which he said yes. Then I told him that Jake didn't have his equipment on yet. He was just as amazed as I was. HOW DO THEY DO THIS? He has absent OAE's now and still has those moments. He answered a few short questions that I asked with my mouth covered then 2-3 minutes later he was a deaf as the door again and wanting his implant on.

 Piloting the jet on a field trip April 2000--Jake's class went to the UPS terminal at the airport to learn about mail and package delivery. He thinks he is so cool because he got to act like the pilot. He wants to fly planes when he grows up now! He keeps saying, "I fly airplane Mommy, look at me!" He is staying busy with school and speech therapy homework, but is progressing nicely.

May 6, 2000--Jake went and had an audiogram on his ear he wears a hearing aid in today. He was very good and cooperative through 99% of the testing.
250 Hz from 75dB to70dB
500 Hz still at 90dB
1000Hz from 85dB to 95dB
2000Hz from 90dB to 100dB
3000Hz from 85db to 90dB
4000Hz from 75dB to 90dB
6000Hz still at 85dB
8000Hz from 90dB to 85dB

He also had a CI audio that was about the same as the last one, with thresholds of 20-35dB in the booth and an SAT of 0dB. Funny thing was that I couldn't hear that one! I thought he was guessing when he put the peg in the board and the audi said "No, he heard it, I said something". She did it again and he heard it again...neither me nor the SLP heard them. He scored 32% on words and 69% on phonemes on the PBK testing....up from pre CI of 8% and 49% . He had several errors due to those darned missing teeth again! I sure will be glad when they come back in.

June 5, 2000--School is finally out after all the makeup days from the snow and hurricanes this past year. We are going to be working on speech and language goals on our own this summer and not have speech therapy, just to see how that goes. We will work on using the "ing" form of verbs, using subjects and pronoun structure in speech and using phrases to describe the functions of objects. After much work, we have finally got the Z sound in words pretty consistently. He talks so much more at home than he does at school and I want to show them how well he does, but as soon as I get the audio or video tape players out he clams up and won't talk!

 June 30, 2000--We are busy planning the auditory neuropathy conference to be held in New Orleans next month. Jake is very excited to get to meet all the AN kids that I have told him about.  He has seen pictures of Cierra and Halston and can't wait to meet them and see their implants. I don't know why he is so interested in their implants though, we know at least 100 kids that have implants from Raleigh, Cue Camp Cheerio and the UNC cochlear implant picnic.

Jake at the CI picnicHe is working hard on his speech sounds and making the Z sound in phrases now! We also attended the UNC CI picnic this month and Jake had a fun time riding the train and playing with the other CI kids.  He was even shown on the local news as they talked about implants.



Repeating K

ANSD Information is owned by the parent of a teenager with ANSD and  has no ties to any implant center, audiologist, hospital or clinic.