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 with 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!
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
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 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
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 ABR’s using the cochlear implant electrodes as stimulus show positive ABR’s 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
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
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
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
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.