July 14-17, 2000--We had the First Annual Auditory Neuropathy Parent Conference in New Orleans, LA. It turned out really nice thanks to the help of Dr.'s Berlin, Hood, Keats and the staff at LSU, Dr. Shallop from Mayo Clinic/Rochester, and Arnold Starr, MD from UCI. It wouldn't have been possible without the generous donation from Cochlear Corporation and an anonymous gift from an audiologist on the email list. There were 25 families with AN children and one adult with AN participating. It was great to put faces wi th the names on the email list. I'm quite sure this was the largest group of auditory neuropathy children (14) to be in one place! The families enjoyed going to the Aquarium of the Americas and Preservation Hall to hear Dr Berlin play Jazz piano.
July 28, 2000--Jake is picking up more incidental language because I know that he hasn't ever heard me say, "Wow Mom, that Pokemon is way cool." He heard it somewhere! We got a new puppy, actually TWO new puppies and Jake is as happy as he can be about it. He talks alot about them so I keep telling myself this was a good idea because of the language! I have orders to put a picture of his brother in this page so here is a picture of both boys and the dogs, affectionately called The Punks. Now, back to Jake and language issues! In January he would say, "puppy sick...poo-poo yuck." Now he says, "Mommy, Rascal sick, poo poo on floor...him make stinky mess." So just the difference in that sentence has been great. Okay, I know that is a gross example, but that is all I can think of right now!
August 27, 2000--I am so very pleased with Jake's results that I cry with happiness. Tonight he came up and told me "Take my tooth out, it's stuck, it hurts." Eighteen months ago he would have said, "stuck, hurt," and point to his tooth. He also can not stop talking about Cierra and Halston that he met in New Orleans. He keeps telling me, "Cierra have implant, Halston have implant...not like Jake's...why not the same?" (They have a Nucleus and he has Clarion.)
August 14, 2000--Jake has not really been interested in reading and that is a MAJOR concern I had in school this year since he is repeating Kindergarten. Friday we visited the school so he could meet his new teacher and he was very involved in these books he was looking at and we wondered if he was reading more than we knew. Well, he has gotten this reading bug out of the blue. Last night I read him three books and tonight I had to read him 6 big books, like the Bernstein Bears books....finally had to say no more tonight...boy my throat hurts now! He was able to say many of the words when I pointed to them and was tickled pink that I made such a big deal about him reading the words. I feel like Christmas has come early! Makes me feel a bit better about school this year. Another milestone was that he actually told the new teacher good-bye when we left. His deaf ed teacher had already told her that Jake may not talk to her for a couple of weeks because he doesn't like change at all.....but he surprised us all. He is really starting to come out of his shell! For him to talk to Misty and Cierra at the conference was just mind blowing to us, because he doesn't usually talk to people he doesn't know for days or weeks!!!!
September 2, 2000--Today is the one year anniversary for starting the email list. I'd have to say this is one of my major life accomplishments to be proud of. There are 210 members on the list now. Without Jake, I would have never had the opportunity to touch so many lives. So, to answer the question I have asked myself so many times. Yes Elaine, God did have a reason for giving Jake to you. :)
September 3, 2000--Jake started back to school two weeks ago and loves it. He is now 6 yrs 8 months old, implanted for 18 months and is repeating Kindergarten. He immediately fit in with the new teacher, her assistant and the other children, but is having some issues with the small room they moved his TOD into. He doesn't like it because it has no windows or room to do anything and that is our issue every morning, getting him in the door to get his soundfield microphone for the teacher. It is his responsibility to get it and carry it to the classroom, but we have this stand off about him trying to get me to do it almost every morning. Finally, on Friday he took it himself and went to class! We have worked very hard this summer on making complete thoughts and sentences and have finally had a breakthrough. I am HAPPY to report that he has started to use the words "it", "him", and "her" in his speech. In many areas of language acquisition charts he has gained over 2 or more years since he was implanted! Finally, after weeks and weeks of trying to get him to use the word "and" to connect thoughts he did it! We were getting books out to read and he said, "I want to read this one and this one and this one and this one and this one," before I finally told him that was enough. He kept on getting books and saying it. He loves to be read to and is trying to read some on his own but doesn't like for me to ask him to read. Tonight, he was going upstairs without his implant so I stomped my foot to get his attention. When he turned, he saw I was irritated and said "Ok Mom, who's in big trouble, Jake or Josh?" We have also worked on articulation, which is really showing now. He has learned to do the "f" sound with 5 missing teeth and gaps between the ones that have came back. This took MUCH work! He is putting the "ing" at the end of words and making inferences on his own so his speech therapist is pleased with his progress, especially since he didn't have any formal speech therapy this summer. It is just so exciting that he is finally getting it all together and using sentences instead of phrases all the time. He talks to the other kids at school that he knows but at the doctors office this week we had a huge breakthrough! He initiated conversation with other kids and they understood him! Sometimes I have to pinch myself to be sure it is all real, but boy that pinch feels good!
September 28, 2000--We are currently working on possessive markers in speech. For instance saying, "The boys puppy," instead of puppy or his puppy. He doesn't like the drills but is catching on. We have also worked very hard on subject/pronoun issues in his speech and he is doing great with it now.
October 10, 2000--Today the headlines in the paper are that the school that Jake goes to is going to be a year round school starting next July. They have to vote on it, but the board has already said they are changing two schools to the year round program and there are only two mentioned in the paper. In other words...Its a done deal. So here I am, thinking things were going good and going to stay that way and now I feel like the program is crumbling just like the preschool program did. Hopefully I am worrying too much.
October 15, 2000--Jake's exciting sentences for the week!
How did you do this?
Why did you do this Mommy?
Would you stop hitting me Josh? You are mean!
I really scary of the ghost outside in that tree.
In speech he is working on the F sound and doing very well with it. He keeps saying that he is going to be a fire fighter and stop fires when he is big. Hmmm, two weeks ago he was going to be a policeman.
October 18, 2000--I found out today that Jake was approved to do the Fast ForWord computer language program. I am EXTREMELY excited because I have been hinting for it for quite a bit now. They claim that the average child gains one to three years of language and increased reading skills so that would be a great thing for Jake. Hopefully, we can get started soon. He needs pre-testing and then to get the program loaded and started.
November 14, 2000--Tonight the school board voted to make Jake's school a year round school, they didn't care what any of the families said in the end. Most of the core PTA and active parents are going to be redistricted to other schools. Total worry and fear for the schools future looms overhead for our family, especially what will happen to the hearing impaired program.
November 20, 2000--Jake learned how to say the voice off TH sound today! He keeps saying Thursday, three, and think over and over and he is so proud of himself! It is rather soggy around here though as he is splattering us with spit everytime he does it. (SMILE) Hey, what's a little spit among family, right!? On another humorous note, I forgot to put his speech therapy folder in his bookbag this morning and he was giving me this lecture about being in big trouble when he put his hands on his hips and said "You are going to bed a eight tonight, you got it?" I about died laughing! I wonder where he heard that before? He is very talkative today and was excited about the snow we got yesterday. Another major hurdle we crossed is him saying "snow" instead of "snope"! Been a nice day here!
November 23, 2000--Jake has said Happy Thanksgiving at least a thousand times showing off the new TH sound he has learned. He also told his Grandma Lulu on the phone. It is happy and I am so very thankful for the cochlear implant that has changed his life so much.
November 29, 2000--Jake said these sentences today during our speech therapy homework session, without prompting!
The bird is over the rainbow.
The flower is under the rainbow.
The girl is on the bridge.
We have also been working on some basic concepts that he didn't have when they did the pre-testing for Fast ForWord like over, on top of, under, between, behind, and in front of and working on negatives. He is doing well and catches on fast once it clicks in his mind.
December 2, 2000--Today Jake said the sentence, "I see a white car and a black car too," which I thought was pretty good since he used "and" and "too" in the same sentence. He is still saying Happy Thanksgiving just to irritate me, so I am working on getting him on a Merry Christmas kick!
December 4, 2000--Jake is so comical sometimes I have to bite my lip so I don't laugh at him. Tonight we were doing his speech homework and I told him he was doing a good job. He looked at me and said "No Mom, Russo say very good work Jacob!" THEN he said "I am so smart, huh Mom?" He's a little brat! The school board met tonight and decided to delay changing the school to year round until 2002! One less worry at least for another year.
December 6, 2000--Today Jake told Josh to "I will fix it later, okay Josh?" when they were playing with their Lego's. His sentence structure continues to improve more every day and he is expressing complete thoughts orally.
December 9, 2000--We went out to eat tonight and as usual, the boys argued over what to eat. Jake said, "I don't want no pizza Mom, I want some chicken nuggets." A pretty big sentence for him. I was just looking at the Bloom and Lahey language chart and he has advanced from phase 2-3 up to phase 8 in several areas since implantation. Cool!
December 19, 2000--Jake mastered the goals to use the words between, in front of and behind expressively today! He also completed the on, over and on top of goals about a week ago.
December 22, 2000--Jake will not stop singing "Jingle Bells" and is about to make me crazy. His speech is so clear people can't believe it. He is very excited and keeps saying, "Papaw is coming Lulu's for Christmas, down from heaven.....yay, I get see Papaw!" Breaks my heart to have to tell him it isn't true, but he keeps on saying it over and over.
December 30, 2000--We had a nice Christmas, Jake was very excited and talking everyone's ear off. Now I can't shut him up! Never in a million years did I think this would happen! He also had a "hearing moment" while we were at my Mom's house. It was the first time she ever saw what we had talked about so many times. When I got up they were all up talking and Jake was talking with them. I asked him a question and he answered me, then another and he answered. At that point my Mom asked me if I knew that he didn't have his implant on! I said "really?" and she said that he had been talking and answering them all morning and didn't have his implant or aid on. Finally, she saw this and knows that we were not crazy when we said that he heard us sometimes without equipment. He has refused his hearing aid the entire break from school.
January 3, 2001--Jake went to UNC for some research type testing to be done with his implant on.They did and electrical ABR and reflex testing and got exactly what they wanted...WAVES on the ABR and electrically elicited MEMR! They said that they got really good information from him (Initial results from post-operative, electrically-evoked ABRís using the cochlear implant electrodes as stimulus show positive ABRís on apical, middle, and basal stimulation. Furthermore, electrically-evoked acoustic reflexes were observed in the ear contralateral to the implant.) Unbelievably, he behaved for the entire time. Whew!
January 10, 2001--Today was Jake's birthday. He is so proud to be 7 years old! But, for me it was a little sad because he is the oldest child in the class and I fear that when he is older that he will be picked on because of that. He really doesn't know he is different from the other children, but one day he will realize when the bullies pick on him. It's too bad you can't protect them from all the mean things that will be said to him in the future.
January 16, 2001--Jake asked me today, "Mommy, what happened to Papaw (when) him died and go heaven?" "Why him go leave Lulu, Jake, Mommy, Daddy, and Josh?" Broke my heart and is really weird because today is the anniversary of his death. Something I haven't mentioned around him.
January 22, 2001--While in the library for reading circle today, Jake answered a question about the book they were reading! Everyone was very excited with that breakthrough in participation. He is still doing Fast ForWord and doing pretty good. We also started a reading program called Reading Milestones with him and he reads the entire first book every night and then does the homework sheets that go with it.
He got his report card for the first semester and made Satisfactory on all goals except for Is Attentive and Listens Carefully which he got Needs to Improve because he is a wiggle worm and daydreams sometimes. The teacher commented that he shows a great improvement in his ability to interact with his classmates and teachers. He is beginning to respond to specific questions at group time and relaying his ideas to very simple sentences. At this time, Jake still knows more than he communicates to me and that they would continue to give him opportunities to develop self confidence in talking to them. They also commented that he is identifying the basic concepts of print and showing interest in beginning to read independently.
January 30, 2001--We have worked on irregular plurals for what seems like months, but is really just a few weeks. Tonight in speech homework, he told us that it is "one goose, three geese" and even got mouse/mice, deer/deer on his own!
February 2001--It is hard to believe that Jake just had his two year evaluation for the implant! His speech production scores were awesome. The only errors he had was leaving the N off the end of balloon and problems with the R. He scored 100% on almost every test with his lowest score being 89% on consonant place and manner because of the R and N issues. He made 44% and 80% on the PBK this time, but was not totally cooperative so we think he probably would have done better if he had been cooperative. He would actually point at the wrong picture on purpose for several objects that we knew he knew.
March 12, 2001--I spoke at the RI conference on Auditory Neuropathy and I don't think there was a dry eye in the house after hearing Jake's twisted story with AN. I know I lost it a few times and if it hadn't been for Dr. Berlin holding my hand part of the time I would have never made it. As I spoke, I found out that some of the old wounds that I thought were healed, obviously weren't. I think I did okay even though I was scared half to death. I also got a standing ovation! I wish Jake could have been there so that everyone could see firsthand how well he is doing.
March 21, 2001--I went back to work this week and Jake is not taking it well at all because I have been driving him to school forever and this week I am not able to take him. He acted out at school and cried to his teacher that he missed his Mommy. He was also crying and said he missed me while I was in RI for the conference. I wonder if he is too attached to me. He has never slept over at a friends house because we were never comfortable with the communications issues he had if anything happened. His teacher says he is spoiled, hmmmmm, maybe he is, just a little bit!
March 26, 2001--We are currently working on oral-motor exercises to help Jake produce the R sound with his tongue in the right place. Somehow, he learned to make the R sound by dropping his jaw down to the right side and not by tongue placement. It is alot of work and he really doesn't like it, but he does like the strawberry and grape flavored tongue blades that we use to practice! We are also quite distressed because we found out today that my husband has to have open heart surgery to repair his aortic valve. Both boys got very upset when they heard us talking and Jake said, "Daddy is going to heaven, going to hospital and heaven." Hopefully, we can get him to understand that all people in the hospital don't die.
April 3, 2001--We have been concentrating on regular past tense verbs and opposites lately and Jake is making great progress according to his speech therapist. He has now decided that he wants to be a firefighter and a NASCAR driver when he grows up!
I am an RN in a rehabilitation unit that has different levels of care in other areas of the facility. I take Jake to visit the residents and try to get him to start talking more to people. Finally, he talked to several of them today!! I usually take his puppy so that he has a reason to talk; like telling them his name and such. Anyway, there was one lady that was talking to me very loudly and I was talking right into her ear. On the way home, Jake asked me why the lady was screaming at me when she talked. I told him that she was deaf like Jake and that is why she was loud. He said "Mommy, she needs an implant!" I just thought that was so cute!
April 12,2001--We had to cancel our camping trip for spring break because of his Dad's heart problem. We were able to take a day trip to the zoo here in NC. Jake had a great time and learned lots of new words and animal names while we were there. He really enjoyed himself but ran me up and down those hills all day!
April 18, 2001--We are now working on the voice on TH sound and he is doing really well with it in the initial position. We went to the zoo on spring break and Jake loved seeing all the animals. The break is over, and he was glad to see Miss Overcash again. She is his teacher of the deaf that he is with about two hours a day and he absolutely loves her. So much that he tells me that he is telling Overcash on me when I scold him because he is HER baby! He is a rotten little boy. He is the leader in his class for the reading goal of 150 books for the year with 221 books that either I read to him or he read himself! I have noticed that he is really trying to sound out unfamiliar words now since the Fast ForWord program was completed. He will have his post language testing soon to see how much progress he makes.
April 24, 2001--Jake told me the tonight that he knew why Daddy's heart had to be fixed. This is so sweet so you may need a tissue! He said, "Mommy, I know why Daddy's heart is so sick." I asked him why and he replied, "Daddy has a BIG heart, big with a lot of love and it got too big and broke.....so now he needs it fixed!"
April 25, 2001--Jake got in trouble for talking back tonight and after I punished him he told me that I had a "little tiny heart, not like Daddy's big heart of love".......haha, talk about a manipulator! Then he said a prayer at the supper table that I couldn't understand all the words to but was something to the effect of..."Papaw in heaven, Daddy's heart is sick, him go to hospital, not want him to go to heaven too." I almost started crying right there. He is very worried about Dad's surgery because everyone he can remember going to the hospital died. Now he thinks that if you go there you are so sick you will die. He was also asking some good Wh questions tonight spontaneously. Like he asked me, "What is a stomach," and when I explained it he asked, "where is my stomach?" I showed him and he said, "Oh, it's my tummy Mom!"
April 26, 2001--I had an end-of-year teacher conference today and Jake was with me. We had been talking about how well he hears and understands with his implant and how much more "hearing" he has than the other implant kids we know. At the very end I whispered something to the teachers that I didn't want him to hear, because I said a naughty word (oops). He was a good 5 feet away from us and all the sudden I have this tap, tap, tap on my shoulder saying "Ooooohhhhhh, Mommy, I heard that" We all looked shocked and he just grinned and said "I told you, I heard what you said." Is that cool or what? He has also been saying alot of words that are slang like gimme, and whatcha doing? I know that this is partly due to the cueing but I don't cue at home so he is picking it up through audition alone, among some other words that his brother said that I don't approve of! He has also started adding, "Right Dad?" or "Right Mom?"to the end of sentences just like his brother does. This drives my husband and I absolutely nuts with one kid doing it.....not we have two of them.
April 30, 2001--Jake's Dad had surgery on his heart today. We had a bit of a scare when I went to visit about 6PM and I think he may have heard the conversations around the house and panicked. He has been very scared, but when I called home tonight to tell the boys goodnight, he got on the phone and was begging and pleading for me to "Please come home Mommy, please, please come now." It was so sad because he wouldn't be quiet long enough to hear me say I was on my way after visiting hours. Well, when I got home tonight my Mom said that she had a big scare while I was gone. Seems that Jake shut down even with her trying to tell him that I was coming home after I checked on his Dad. He hid under the table for a while and then when she said it was bedtime he rebelled and ran out the door and down the middle of the street at 9PM! For him to run off in the dark he was really upset. I think he realized that he was alone outside in the dark and couldn't see our house and decided to come back to his Grandma. Scared her half to death though. It broke my heart to know that he is that scared of this whole situation.
May 15, 2001--Jake has been very clingy lately and wanting to sleep in his implant. Last night he started crying when I tried to take it and I asked him if he liked it. I was shocked because he said "NO!" I asked him if he liked being able to hear and he said, Yes, but no implant." I kept telling him that he was deaf and there was nothing we could do to help him hear except wearing the implant. I encouraged him to tell me why he said that he didn't want the implant to hear. He got very angry and screamed at me "I DON'T LIKE DEAF! I WANT TO HEAR", and burst out crying with those huge crocodile tears running down his face. I was so upset wondering if someone had said mean things to him at school and wound up crying myself to sleep. It breaks my heart because I would do absolutely anything if it could make his hearing magically appear...even if it meant I had to be deaf. Sometimes, no matter how well he is doing with the implant, I become very angry that my precious son has to be deaf. He is just an innocent child and doesn't deserve all the difficult times he has faced already and will face in the future because he is deaf.
May 30, 2001--Today was the last day of school! Jake is going to first grade and he made satisfactory on all areas of his report card. He also won the reading award for his class! Exciting stuff! He is reading at the level he should be for leaving Kindergarten. He still has difficulty retelling a story, but I think it is a self confidence issue personally. It has been a busy month with end of year evaluations and testing. Jake doesn't test on paper to have a huge gain in language after Fast ForWord, but we see a huge difference in him by observation. We filled out the questionnaires to assess for ADHD but he only scored a bit high in impulsivity again. It amazes me because he is having a hard time sitting still in circle time and can't keep his hands to himself.
We are planning the Second AN Listserve Reunion this summer at Mayo Clinic in Rochester, MN. How exciting!