The First Months of Hearing
March 10, 1999-----Jake is adjusting to the implant much better than we expected him to on the second day. He wore it all day without complaints and was happy to show the teacher his processor on his first day back to school. He was king for the day because he was the only child at the preschool that day and especially liked having his assistant, Leighann (neenan as he called her), all to himself! When he went to mainstream he adjusted well and tolerated the noise. The hardest thing for us all is that after the implant you are at ground zero again. He is a newborn, hearing things for the first time through the device, which meant we had to start at the beginning with speech sounds on the Auditory Learning Guide. But we knew that he should move quickly up to the point he was pre-implant, once he learned how to "hear" with the implant. I was so afraid he would be bored and loose interest quickly but when he went to his session with the speech therapist, she had planned to start him over in the vowels. When she got her games out Jake picked the card with the letter B on it and told her he wanted that one. She went along with it and was amazed at his production of the B sound. This had been one of his worst consonant sounds and we had spent month after month trying to get a good sound from him. Now, activated for less than twenty four hours, he is saying the sound the best I had ever heard him produce! I am happily surprised that he is recognizing speech so well, so fast. We were told not to expect too much speech recognition right off the bat, but with Jake....always expect the unusual. We learned that a long time ago, when we were introduced to the world of Auditory Neuropathy.
By the end of the day, I had moved him up to map number two and got the thumbs up from him. On the way to school this morning, just like all the other mornings for years, I activated the turn signal in the car. Jake said "HEY, what that noise?" I didn't know what he was asking about and when asked he made a sound like the blinker clicking off and on. I never realized that he had never heard that sound before. I quickly realized how much I take for granted with my hearing. He wanted to listen to everything he saw. The birds chirping, the wind, the icemaker dropping ice in the pan.......it was amazing to see his face light up when he heard a new sound and was looking everywhere for it. He is hearing so many things that I never thought he would hear. The only sound that really startled him was a low flying airplane over our house today.
March 11, 1999-----We attended the first weekly parent training session since activation and were pleased when Jake alerted to noisemakers, although he had some difficulty locating some of them at first. He was able to respond and repeat the Ling sound check from 18-24 inches with little difficulty. He had trouble hearing the S sound but we were shown how to lower the frequency of the sound so he could detect it. We started work on the common direction, "Throw it away" and are to cue it, say it behind our hand, then cue it again and give him the hand cue to say it. He did GREAT! We got five Learning to Listen sounds to work on as well. We worked on so much that he was exhausted after the hour, but was still eager to listen for new things. Later in the day we advanced to map number three and he responded to a whispered "bah, bah, bah" by repeating it from two feet! He wore his hearing aid in the unimplanted ear and would make a sound, turn the aid off,make the sound again, then turn the aid on and repeat it. He liked to compare the difference in how the two sounded. He would say "Not same!" and smile. It was too funny because he would tell me to listen to it as he turned the aid on and off, not realizing that I couldn't hear the difference!
March 17, 1999--We got the results from Jake's psychological evaluation at Duke that was done earlier this month. He tested in the average to high average range for intelligence using a completely nonverbal cognitive skills test. He did well but had a "meltdown" when the items became too hard for him. Based on the observances at preschool, the behavior log that I and his teacher had provided and the child psycholgist's observations, Jake meets the criterial for Oppositional Defiant Disorder (ODD) but did not appear to exhibit Attention Deficit Hyperactivity Disorder (ADHD). It pretty much said that the evaluation and recommendations done by the deaf school behavioral specialist were totally wrong on how to deal with a child like Jake. Of course, we all knew that already and had discussed that the previous recommendations weren't in his best interest. We have started a behavior management plan based on the new recommendations and are participating in a research study on behavior management in hearing impaired children through the University of Kentucky.
March 21, 1999-----We are diligently working on our five Learning to Listen sounds and he is much happier with the games and songs this time around. He hated activities with singing before the implant. He even get some of the toys out and starts making the sounds of things we aren't officially working on yet!
I really thought that his speech was better in the first days. I never mentioned it to anyone in the neighborhood for fear they would think I was exaggerating. Today two of them told us that Jake was talking clearer in the past weeks. We are also seeing that he has several words that we didn't know he knew because we couldn't understand him before.
March 25, 1999-----Our second parent session went very well. Jake repeated all of the Ling sound check from 12 feet except the S, which was at 6 feet. When we lowered the frequency, he did it from 12 feet as well. He also was able to repeat various speech babble targets from the same distance. We are working on two common directions by audition alone and got seven more learning to listen sounds to add. He can identify the first three by audition alone and has already identified many of the new ones the same way. We were told that was a wonderful response for a child that had only been activated for 15 days and the teacher called a report to the audiologist about his progress so far. We went to UNC for a check-up and mapping session this afternoon and had three new maps when we left. He advanced up to map two sometime today because it was there when we put him to bed. He is wearing his hearing aid for mainstream but not for speech therapy or time in the CSOAP classroom and sessions at home. He still doesn't like it when you turn it off and tries to sneak and turn it back on so we usually have to just take it out.
April 4, 1999-----While on spring break, Jake was surprised by how loud the frogs and crickets were at the river, how the water sounded lapping at the shore and the crackling of the wood burning in the fire pit. However, our vacation was short lived as Josh had a temperature of 105 and an asthma attack after we set up our tent and it was dark (of course). Jake became violently ill with nausea and vomiting about midnight and threw up ALL night. It was quite the camping experience. Our trip lasted less than 24 hours start to finish. At least he got some new listening experiences. He isn't wearing the hearing aid now and isn't complaining about it. We want him to get used to the sound of the CI alone for awhile. He is noticing alot of little sounds around the school and house and questioning what they are with each mapping. A big thing I have noticed is that his behavior is better! He is more talkative with the neighbors as well and they understand him. What a wonderful change I have seen in him.
April 15, 1999-----Yipee! We went to UNC for mappings after his session. His teacher was thrilled with his progress and called ahead to tell the audiologist that he heard and repeated the Ling sounds from 12 feet this morning, and was progressing quickly in his lessons! FIRST AUDIOGRAM with the implant! Jake did so well, the audiologist looked shocked at his thresholds. He heard the tones at 30dB at 250, 1000, 2000, 4000Hz, 25dB at 5000 and 40dB at 6000Hz. His threshold SAT was 10dB. I never thought he would hear the sounds so well, so soon. Our parent session today went well. Jake has mastered his current learning to listen sounds so we got three new ones. His speech babble is coming along well too.
April 16, 1999-----Jake has already advanced his processor to map number three at bedtime. He wants sound and he wants it now! I am rather concerned about Jake's future at the preschool. He is technically eligible to stay another year to play catch up but his teacher is out on maternity leave and is not coming back next year. The program is falling apart, the teacher there now can't even cue! What a mess this has become for Jake. Do I keep him there and risk having a less than qualified teacher or throw him on into Kindergarten to sink or swim? I know that if he does go to big school that he will be repeating Kindergarten because there is no way he is ready. What to do?
April 20, 1999-----While shopping at a garden center, we saw a garden pond display. The water was gently running over the rocks as we walked by. I kept walking, but Jake stopped and kept calling me to come back to the display. He got that funny look in his face again, looked at me and said "MOMMY, I hear water!" Later that day he was busy telling me all the things he saw as we drove down the road and he said "That's a tall tree" with an R sound in it! I was very excited that we finally heard tree and not twee!
April 21, 1999-----Jake and I went on a field trip with his class to Farm Days at a local college. Jake had a blast and was really excited about hearing some animals make a sound for the first time. The look on his face when he heard the baby chicks was priceless. He didn't realize that they made a sound and had been around baby chicks plenty of times at Old Papaw's chicken farm. He held the chick right up to his microphone and grinned from ear to ear. When he heard the horse whinny his mouth fell open and he threw his hands up and put them on his cheeks. Priceless, just priceless! There are pictures of this in the implant pictures photo album.
April 29, 1999-----Jake completed his IEP goal on the learning to listen sounds! We are concentrating on intensity of speech babble as this is his hardest since we aren't to a perfect map yet.
May 4, 1999-----Jake is speaking more clearly and talking more
to the neighbors. They actually understand him now! Today he was playing with
his girlfriend (yes, at 5) and came home singing the *I LOVE YOU* song from
Barney.......he learned it playing with his gal!!!!!! From a kid that used
to go to time out rather than sing. I have to pinch myself sometimes to be sure this is all true.
May 11, 1999-----Today was Jake's three month evaluation, but he has only been activated for two months. His audiogram was not as good, but he was just a little uncoperative at times. He was at 30dB at 250, 500, and 6000Hz, 35dB at 1000 and 3000Hz, 25dB at 2000Hz, and 40dB at 4000Hz. His threshold SAT was 10dB. I am VERY pleased with his speech recognition and production improvements! He was not a cooperative young man for the PBK-50 and the Early Speech Detection testing but I have to remember that his scores are of a child that has only been activated two months and are great. His scores were:
Word Patterns improved from 81% to 96%
Syllables remains 100%
Stress/intonation remains 100%
Initial consonants improved from 71% to 100%
Final consonants improved from 53% to 88%
Vowels improved from 87% to 95%
Dipthongs decreased from 93% to 87%
Consonant manner improved drastically from 25% to 65%
Consonant place improved drastically from 21% to 63%
Consonant voicing improved from 55% to 90%
PBK-50 open set
Word from 8% to 12%
Phonemes from 52% to 49%
Early Speech Detection-
Stress from 100% to 92%
Word from 100% to 92%
Early Speech Detection-Word Identification
Spondee from 75% to 83%
Monosyllable from 100% to 67%
May 12, 1999-- I have finally decided to go ahead and send Jake to Kindergarten with the never ending changes at the preschool program. I believe that being with his hearing peers will be most beneficial to him.
We had his transition meeting from preschool to Kindergarten today. Everything went pretty smoothly. The speech pathologist reported that he is progressing well in audition goals and would need new IEP goals before the present one is up if his rate of improvement is steady. Some of the behavior issues have also improved since he was implanted with less oppositional behavior and acting out. The principal of the school for the deaf stated that she saw an improvement in him and that he is much calmer with the implant. We decided that he will be in SPED instruction for four hours and fifteen minutes a day at the beginning of school and gradually work him up to more in the regular education class. The LEA and TOD were concerned with this amount of time but given his history of problems adjusting to changes I felt this would benefit him more. We are starting with one hour a week of one to one speech therapy for articulation, but I feel like the teacher will be an ally and help me get more after school starts. He will also be increasing his time with a TOD from three times a week to five times a week and they will work on audition and language goals. I REALLY like the TOD, Lauren, and I think she will be a very important person in Jake's life.
May 16, 1999--Just back from Cue Camp Cheerio and we are exhausted. Everyone that knows Jake was impressed with the amount of progress he has made already with the implant in two months. He has had the same teacher (Wendy) in the class there since his first camp. She saw quite a difference in him from last year too.
June 4, 1999--We just returned from Mississippi on an emergency trip. Old Mamaw has pancreatic cancer that has metastisized to EVERYWHERE else. She has not been told the exact answer but she has about a month to live even after extensive surgery. Jake and Josh were really upset to see her so sick with all the tubes. Jake just petted her on the arm and looked so pitiful. All he said was, "her sick." She said that she just wanted to hear him call her Old Mamaw once before she dies. God, I hope she gets that wish. He also touched the electric fence while we were there and got a jolt. It doesn't appear to have affected the implant though. Whew!
June 25, 1999--Jake graduated from the pre-school today. They planned a little ceremony at the last minute and I had to work, so I missed it. My husband took pictures for me. Jake liked it because they got presents and cake!
July 4, 1999--Jake really enjoyed the fireworks tonight. I was afraid that it would be too loud for him with the implant but it didn't seem to bother him at all.
July 5, 1999--Old Mamaw got her wish. I called her tonight and she was able to hear Jake say "Night, night, old Mamaw, I love you" on the phone. She went into a coma a few hours after we called and passed away shortly after that.
July 7, 1999--Jake and I went to Mississippi for Old Mamaw's funeral. He kept touching her and trying to wake her up. He was saying, "Old Mamaw sleeping, wake up!" and "why her sleeping in box?" He just doesn't understand it all.
July 8, 1999--My Mom woke me up this morning saying "Jake was
down there riding in the highway on that tricycle....." I almost died
because I just knew he had been killed. She woke up around 6:45 and was working around in the house and back porch. The bedroom door was closed so she thought that Jake and I were still asleep. At 7:20 she heard the dogs barking and a knock at the door.
This elderly African American gentleman, that is a dear friend of the family, was at the door and was just a bit pale looking. He looked like he was about to cry and then he told her that her little grandbaby that can't hear was riding his tricycle in the road, right down the center line and a big truck swerved off the road to miss him. He knew Jake couldn't hear him but was able to get him on our road and back up to the house.
He was going to Old Mamaw's house because she gave him candy all the time and he loved that. He can't understand that she isn't
coming back. He would only point at the road to her house and say, " go over there" when I asked him where he was going. We spanked his little booty and warned him again about the road. He never tried to go down it anymore today,
but tomorrow is another adventure.
July 9, 1999--Jake wouldn't wear his hearing aid today. He said "Implant hear okay, no hearing aid" (Actually it was, "Impant hear otay, no hear aid.") I offered it to him several times and he just said, "I SAID NO HEAR AID!" His speech is much more understandable now. The other kids in the family that have rarely seen him since we live so far away could understand most of his speech!
July 21, 1999--We are in Ohio to visit Grandma Naomi. She was excited to see Jake and have him respond when she talked. He didn't say much to her, but he did talk a little bit.
July 27, 1999--We are in Mississippi to see Grandma Lulu and Papaw Will now. Our third trip in less than three months, so we are road weary. Jake touched the electric fence again but seems to be okay with no implant problems. You'd think he would learn! Everyone is amazed at what he hears and how well he is speaking now, in just four months. He learned many new words on the farm and enjoys the animals.