Silence

I was talking to Miss Kat with her implants off tonight and I asked her if she could hear me. She said "No but I can read your lips and your signing". (Of course I knew she couldn't hear me but it was leading to the next part.) So I asked her what she could hear and her answer was "Nothing". So, I asked her if it was weird not hearing, and she said "No, I like the peace and quiet." Then she said "I like hearing things like jokes, but not the rain, or the crashing and crackles (I think she meant lightning and thunder). Daddy has to wear those things in his ears (earplugs). But that is why i am just deaf."

Insightful.

Observations from a deaf child

This weekend Miss Kat made three really cute comments about her hearing that I feel like I just had to share with the world.

The first was Saturday afternoon when Miss Kat was hanging out with her Grammy. They both had headaches and Grammy was bemoaning every sound that hurt her head. Miss Kat flicked off her headpieces and smiled widely. She said to Grammy, "Bet you wish you could do this! There is no more noise." And then she laughed.

Later that night it was time to say prayers and Miss Kat had already taken off her processors. She said "Don't worry, I can just say it in my mind." She then proceeded to say the prayer aloud...guess she didn't realize that we can still hear when her processors are off. 

The last was on the way home from church today. We were listening to Christmas songs. Miss Kat disagreed with Grammy's interpretations of some lyrics so she said, "You are not good at listening. Maybe you need new cochlear implants!"

Time passes...

I don't even know what I am going to say with this post, but here goes.

Miss Kat just passed her fourth anniversary of activation of her first CI. It has been a crazy four years! She has grown and blossomed in so many ways. My opinions have changed as our journey has continued. We are in such a different place than I expected when we took our first steps on this road. I was arrogant, I was misinformed and closed minded. I thought I was smarter than all the other parents. I thought that I had it all figured out. Well, life has a way of showing you how wrong you are!

Miss Kat is now functionally, completely oral. Yes, we continue to expose her to ASL, we try to attend ASL/Deaf community events, use interpreters, have her around ASL using adults and children, but on an every day basis, as a communication method, she doesn't use ASL. I certainly never saw that coming. I don't think anyone did! It was never our intention to for Miss Kat to use spoken language as her primary language. We assumed that she would be using ASL for expressive and receptive communication every day for the rest of her life. As fate would have it, that isn't how things turned out.

I thought I knew what our path looked like, and I judged others who did not choose the same. I thought we were smarter, better parents, and that we "got it" when they didn't. Again, fate stepped in an showed me that I was wrong. There is a whole other world that I had never been exposed to, a whole group of deaf people whose experiences I had never heard. My eyes were opened, and I recognized how naive I had been.

This journey has certainly been a surprise, but every day when I see how happy she is, how much she enjoys communicating, how many doors have been opened for her, I wouldn't change a thing.

Advanced Bionics New Products!

Here is the paperwork from which these photos are pulled. It is a PowerPoint presentation given to investors on Thursday. http://www.sonova.com/Presentations/20121025_EUHA_Presentation_Handout_1.pdf

And here are the photos of the new internal device and processor.

They are a little blurry because they had to be blown up from the PowerPoint, but I think it is clear that they are much smaller and thinner than the Harmony. They also obviously have a thinner T-mic. The internal receiver appears to be thinner and square now, rather than round like the 90K. In one of the photos the battery case is rounded but in the other the corners are flat...my fully uninformed, wild guess would be that one is rechargeable, the other disposables.

And your baseless guesses, uninformed opinions???

Back to school, times two

Miss Kat is back to school and loving it! She has bumped up a level, so to speak. At her school, the students are grouped by ability, rather than by grade. Last year, as well as the first semester she was here, Miss Kat was grouped with kids a little bit younger than her. This year, she is with students OLDER than her! She has really made a lot of progress, especially in reading. They were reading the Captain Underpants LAST YEAR! This year they are reading Little House on the Prairie. This is a really big jump, but I think she is weathering it well and she will rise to the occasion. Our IEP is next week, and we will get the results of her latest testing and write up our goals (which I will share here, of course).

The next piece of news is that I have also returned to school! 

 I am in school full time again, and guess what I am going to be? That's right, a teacher of the deaf!! (Hubby thinks I should put in the extra two years and do audiology, which is a passion of mine, but I have always been a teacher, so the classroom holds a special place in my heart, so we'll see!)

Her first phone call!!

Miss Kat got her first phone call from a friend today! She was in the bathtub and I picked up my cell phone and it was one of her friends from school. She asked if she could talk to Miss Kat. I was stunned. I said ok and grabbed Miss Kat's Harmony (because the Neptune has the mic on the headpiece, which is unsuitable for the phone) and gave her the phone. Her friend then asked "When am I going to come to your house and play?" Miss Kat was surprised and said "What?" Her friend said "Can I come on Saturday?" Miss Kat looked at me, and I nodded, so she said yes.

Wow! A friend from school getting her phone number and calling her up! She is getting so big!

***Turns out that the friend did not have authority to set up a playdate, and they are going out of town for the week-end, but still! A friend who likes her so much that they call her at home (and actually, turns out that she left a voicemail on my phone yesterday too!) and is that excited to hang out with her! I'm so happy for her!

Neptune Time

So, we have been having nothing but problems with the Neptune! Miss Kat reported that she could hear nothing with it. Through several phone conversations with AB, we tried drying the headpiece, switching the headpiece, changing programs, switching to the universal headpiece, changing the cord, trying different kinds of batteries, and finally trying a whole new processor. All to no avail. The Neptune would power on, flash 4 orange light (showing full battery), one green (for program one) and then flash red until connected to her head...that was all perfect. Then, when we connected it to Miss Kat, no sound, and the processor wouldn't flicker green in reaction to any sounds. We weren't getting any faulty lights, Miss Kat just couldn't hear. At first we assumed maybe it was a bad mic, which would make sense (since the processor is showing all the right lights, it thinks it is working, the sound just isn't getting through.) Well, we switched headpieces and that didn't fix it. So we switched out every possible piece, and still no sound. Oh, and did I mention that Miss Kat is in Utah, and her Nana is having to do all this troubleshooting, over the phone with us, having never touched a Neptune before! She had no idea what to do!!

Finally, I get ahold of an angel of an audiologist at AB. I am VERY frustrated (and probably rude) at this point. We have been dealing with it for 5 days, and AB had sent out every part imaginable. So, I repeat our problem and list all the things we had tried. She says "I think the program is set to aux. only." Ummm, what? She asked what the microphone settings were on her Harmony. I replied that last I checked, they were 50/50. She explained that if her MAP was set to t-mic only (aux), and then just loaded into the Neptune, she wouldn't be able to hear. The processor would be working perfectly, except that the mic wouldn't be turned on! Well, duh. Where was she 5 days ago??

So, Miss Kat headed back up to Cache (who profusely apologized) and switched it over. She now hears just fine and can finally start getting wet!

Goings on

We received the Neptune yesterday. It is awesome! It came will a full suitcase of parts, including 3 different color options. We are so excited. We mailed it off to Miss Kat (who is in Utah visiting family), who should get it in less than an hour!

Yesterday, Miss Kat also had a MAPing appointment with her old audiologist from Utah. I wanted another set of eyes to check out her hearing. I love Cache. He is really invested in making sure his patients hear well, and we have the same approach to testing and MAPing. He is extremely aggressive and willing to push Miss Kat in order to ensure that she has the best access to sound. He tinkered around and made some changes, and did some discrimination testing. He says Miss Kat is doing amazing. He thinks her scores are great (I think there is plenty of room for improvement!) He hasn't seen her sent we moved for Miss Kat's oral school and he is DUMBFOUNDED by her growth! He says that he is so proud of her and that he wants to show her off. He just kept saying he couldn't believe how far she has come, and said "We did a good thing" (about deciding to implant her.)

We totally agree!

We don't want to jinx it but...

Our Neptune has been ordered!

Insurance came through on appeal! (They denied it the first time, but I guess there was a misunderstanding as to what a "speech processor" is, and when the audiologist appealed the decision, insurance said ok!)

We ordered white

blue

and pink! 

We also ordered the armband 

and the headband

And the Neptune couldn't have come at a better time! Miss Kat is back in Utah for the rest of the summer, and she is not loving the swim-cap. She loved it...until she got a taste of the Neptune. Now she says it doesn't sound good enough, and she complains whenever she wears it.

Hopefully it will be here early next week!!

P.S. (This is totally a blessing of tithing!)

Our storyteller

Last night Miss Kat was reading a story to me. She was doing it with just expression that I couldn't resist getting it on video. I love the way she does voices and keeps looking at the camera to make sure the listener is enjoying story time too. 

We got the Neptune...for an hour!

ASL Camp II

So, I still have lots more to share about our weekend at ASL camp!

Miss Kat had a great time hanging out with the other kids, but....ummm....she wouldn't really sign! She enjoyed the classes and the ASL skits and games, but in her moment to moment communication, she still insisted on speaking. Before we left we had discussed where we were going, and why. She was nervous (as I explained before) but she seemed excited. When we arrived she was a little overwhelmed and would check with me for clarification or explanation when people would sign to her. (I would just sign back what they said to her and she was fine. I just think it was a case of the nerves.) But as she started to get comfortable, you could see her facial expressions and body language sort of "return" to her. (She has always been a super expressive kiddo!)

So, when we first arrived, we went to our dorm room and Miss Kat was chatting at me. I told her that when we were alone, it was fine, but that when were with others, I would be signing and I would expect her to do the same. She said she understood. Yeah, that didn't happen!

Most people were very nice about Miss Kat not signing, or very poorly signing. They were patient and encouraging. That helped her a lot. But, when she felt like it was "down time", like at lunch time or just hanging out, she reverted back to speaking. When we were in classes, or doing an activity (or when we did our presentation of "Goldilocks and the Three Bears" and "The Three Billy Goats Gruff") she signed. Her face and body are so expressive, I just love it! There is one more snafu though...she would often try to sign exactly what she was thinking in English...including "am", "the", "is", etc....yikes!

There was one incident at lunch was was a little crazy. Miss Kat was sitting next to me and she kept talking. There was a Deaf adult at the table. The Deaf woman finally turned to Miss Kat and said "Why won't you sign? Your mom is such a fluent signer. You are so lucky! When I was little, none of my family could sign at all. And now, I'm Deaf, and I can't understand when you talk. We need sign. I see that you say "What?" a lot (which actually wasn't true, she asked me to voice other people's ASL WAY more than she struggles with understanding people speak, but that is neither here nor there), you need to sign because you are deaf." At which point Miss Kat said, "No, I'm hearing.".....oh crap!!! That is the first and only time she has EVER said that! She knows she's deaf, she is around d/Deaf adults and children and has never once expressed that she wishes that she wasn't deaf or that she wants to be hearing, and then all of a sudden she decides (at Deaf camp none the less!) that she IS hearing?! I wanted to hide under a rock!

So, we had a great time. I feel like Miss Kat gained some confidence in her ASL, we were able meet some families, and hopefully encourage them. Our next great adventure begins tonight...AG Bell here we come! (Oh, and you KNOW that Miss Kat is going to decide to do nothing but sign this weekend!)

ASL Camp

Miss Kat and I are back from the State school for the Deaf, and we had a great time! Miss Kat was pretty nervous (she said she didn't know enough sign) but by the time we were packing up, she said she wanted to stay forever! What really made the difference was when we sat down in our first ASL lesson, and Miss Kat looked through the handout and said "I know ALL of these! Is this the easy or hard class?" I replied "Hard." Her face lit up and she said "I know A LOT of sign!"

There were about 9 families there, with kids ranging from 2 to 16. I was far and away the best (non-staff!) signer. It was a strange experience. I reached this level of fluency by the time Miss Kat was 5. I saw parents with kids who were 16 and couldn't sign a sentence. And these aren't oral kids. These are families who have a child who uses ASL a their sole means of communication. I just don't understand how that happens. The saddest moment during a break, when some of the moms were sharing our "stories" (which always happens when you get families together) and some of the older girls were sitting nearby. (Whenever there were Deaf people around, I would make sure that I was at least SIM-COMing,  even if they weren't involved in the conversation, I just think it's polite.) So, a mom was telling me about when they found out their daughter was deaf, and the daughter turns to me and asks, "What is she talking about? Is she talking about me?" I said yes, and gave her a quick run down of what had been said. She said "I can't understand her. She talks too fast. I am DEAF, and can't talk. I sign! I don't know what she says." Her mom sees her frustration (through her rate of signing and body language, I assume) and says "I'm trying!", to which her daughter says "I'm 16!"

I was so sad for her. She has no way to connect with her family. Later, I asked her about where she goes to school. She told me that when she was younger, she attended a local day school for the Deaf, but that her father had moved the family for a job and now she was mainstreamed (with an interpreter) but that she was dying to attend the residential school, but that her family wouldn't allow it. So, she can't communicate with anyone at home or school...so sad.

Another interesting experience was with another teen. This young lady is oral, but now that she is in middle school is starting to learn some sign. We were in the cafeteria for a presentation on Deaf culture. They had interpreters for the families. So, after just a few minutes the young lady's mother raised her hand, she was very upset. She said that her daughter didn't know enough sign to follow the presentation, but also couldn't understand the interpreter because of the acoustics of the room. They asked her what they could do to help her have access to the presentation...but mom just said "She needs to understand the language!" I suggested that the other interpreter sit right next to her and interpret the ASL for her. That seemed to work for her. Then the next day we were having another presentation, this time it was about reading to/with your Deaf child. We, again, had interpreters, but there were fans going and it was pretty noisy. This time the young lady burst into tears and ran out of the room. The family didn't return to camp....


This situation was even stranger to me! The mother had been asking some questions at the parent panel we had about socialization and how to help her daughter make friends (and the only advice that was given was "send her to the Deaf school", and she did NOT like it!) and then she was struggling so much to understand what was going on...it was so sad. 


Ok, so here is my opinion on the situation. If you want your child to be oral, great, so make it happen. There are ways to ensure that a child can hear well in all situations (believe me, next weekend I will be seeing it with my own eyes!), so if you have an oral child, MAKE SURE THEY HAVE ACCESS!! But, on the other hand, if you want your child to learn and use ASL, you have to make that happen too! This poor young lady was stuck in "no man's land" unable to use either language to gain access to information! Something needed to change, so I hope that this was a wake up call for this family and that they will make the changes needed to help her be successful.

Graduation and Honors Day

No, Miss Kat was not graduating! Her best friend did though...and last year her two closest friends....so, I will let her new friend's parents know the good news, she will surely graduate next year!

The kiddos sang a cute little song (one we had been hearing pieces of for a week or more.) And Mommy cried...also not a surprise.

Miss Kat also got two awards this year! She received a computer award for "most improvement in technology skills". Even better though, Miss Kat got a "High Academic Achievement Award". She was awarded this award for "superior achievement in word study". What that means is that on her Stanford Achievement Test (the school does yearly standardized testing) she made GREATER than one year's progress in one year! For the record, Miss Kat made one year's growth in all areas of testing, but in "Word Study" (one of the reading sub-tests) she made 1 year 7 months growth! That is nearly two years!! Go Miss Kat!!

A Guest Post

Not long ago, I began talking with a mother of a deaf child with bilateral cochlear implants. Miss Kat is a little older than this mother's child, and she was asking me some questions about our local services for kids with CIs. I recently asked her if she would share her story, because I think her perspective is very unique. She was kind enough to write something up for me, and here is my first "guest post" in it's entirety.

This is a Deaf mother's story of her Deaf son who has bilateral cochlear implants (CIs) and uses both ASL and spoken English as his communication modes. His first language is ASL and English is his second language.

 

 I was once wary of CIs due to the early technology which was not reliable enough to me, myths, and seeing some of failure cases both personally and as a teacher.  Also the attitude (in certain people) of deaf people being needed to be "fixed" that was attached to oralism and CIs turned me off.  However a few years ago, my perceptive changed when I was searching the web for something. My attention was caught by a posting by a Deaf mother of 2 Deaf children with CIs and use both ASL and spoken English. I was surprised and curious how something like this was possible - a case where CIs actually being used by children of a Deaf household that uses ASL.  This led to my research on CIs and Deaf parents of children with CIs and who use both ASL and spoken English.  I began to realize that I was used to seeing children that didn't benefit from CIs since some public school districts usually send those children to the schools for the deaf.  Successful users are not walking around with a sign, "Look at me!" unless they are willing to share their story.  I also searched for a CI clinic/surgeon that is open to Deaf parents and signing which is very few.

 

My son has had his CIs for 3 years. He actually prefers them over his old hearing aids. We also started auditory-verbal therapy (AVT) when he was one. The therapist taught us some methods that can be used in a Deaf household to help develop a child's listening and speaking skills during the beginning stage.  We enrolled him in a private preschool for listening and speaking exposure.  We are fortunate because the staff is wonderful and willing to work with his services from the local public school district.  The school also runs all round.  Since I am a teacher of the deaf, I am familiar with how to work with the school system for deaf students and find resources which helped a lot.

 

Our son will begin kindergarten as an oral student this coming school year. He will be receiving services of weekly speech language therapy, AVT, oral language facilitator for more spoken English exposure - as in talking more with him about whatever is going on in the classroom, and a teacher of the deaf to check on his progress.

 

The journey has NOT been easy for us as Deaf parents.  We have faced objections and doubts from the Deaf community which we expected due to our decisions with our son.  I know that we will always face this so I am more choosy of who our friends are.  I do appreciate it when a person who is curious asks questions, that he/she wants to know even if he/she may disagree. Despite of what others think, we don't regret our decision. I sometimes wish I could communicate with hearing people with ease (without using pen & paper, etc) as my son is able to do so at his age level.

Cochlear implants and race???

Miss Kat is attending a literacy camp for deaf elementary school students this week. She is loving it! It is fantasy themed and they are talking about dragons and knights and all that cool stuff. She is having a blast.

Well, the camp is being held at a local university that has a Teacher of the Deaf program, and we had never been to the campus before. While I was dropping Miss Kat off the other day, I saw this poster on the wall. It was a poster presentation that had been at the most recent EHDI conference. It was about minority children and their access to cochlear implants and early intervention. What I read was shocking to me!

First, it said that 35% of US kids are on Medicaid. Ok, that isn't particularly news to me. But then it said that only 13% of the kids on Medicaid get audiological services WHEN THEY ARE NEEDED! So, we aren't talking about the entire group, just the kids who have been referred for some reason. Of the reffered kids, only 13% are seen by an audiologist! WHAT?! Why?? I happen to know that audiological services are covered by Medicaid, so what is preventing the follow up?

The study said that 49% of children diagnosised with a hearing loss are "non-white", with the Hispanic children being 24.5% and African American children being 15.4% (uh, but how many are undiagnosed since they are being seen by audiologists?)

It also said that (presumely becaue of the language barrier) the majority of Hispanic familes are given information about only one mode of communication and are rarely given information about cochlear implants.

Next was the most information that was most shocking to me. It said that European American children receive cochlear implants at a rate of three times more often than Hispanic American children and 10 times the rate of African American kids! It also said that African American children, on average, wear their devices "far fewer" hours than white children....WOW...so this begs the question....WHY???

Miss Kat's first swimcap

Summer has been great so far! Miss Kat and I have been having some great mom and daughter time. The weather has been amazing! So yesterday we packed up the whole family and headed to the waterpark!

Miss Kat does not yet have the Neptune. Insurance says they will cover it when her Harmony is 5 years old. That means we have about 18 months. (Big BUT though...her primary right side processor is dead. It is also no longer under warranty. Insurance is going to have to replace it. They can choose to buy another Harmony, which would only have a 6 month warranty, OR do the Neptune, which would be covered for 3 years. We are trying to convince them that the Neptune is the right choice!) But, lately, Miss Kat has not been wanting to play in the water without her devices. A year ago, she just whipped them off and headed for the water. Now she asks if she can leave them on for sprinklers and light water play. We tell her that is fine. But the waterpark is different. She will be in moving water, swimming, submerging herself...the Harmony just can't handle that! So, what do we do??

Enter youtube! As most parents of CI users know, there is a way to "waterproof" a typical BTE processor. It involves a baggie and a swimcap. We had mentioned it to Miss Kat the last couple of summers, but she wasn't interested. This year though, she said she wanted to be able to hear at the waterpark. So...we dove in!

It worked great! She was able to understand the lifeguards and the instructions on the slides. She could hear the warning whistles and announcements. Plus, she looked super cute with her zebra stripped swimcap on! (Plus, we could find her in the crowd easily!)

"Why do you talk weird?"

Friday Miss Kat and I stopped at a playplace to hang out. It was very hot outside and we needed a cool place to play. Miss Kat is very sociable and it is very easy for her to approach other kids and play. This day was no exception. She played very well with several kids and they all admired her Zhu Zhu pet and it's lovely princess dress. They talked and ran and played. Everything was going well until I heard the words..."Why do you talk weird?"

First and foremost, Mama bear came out. I wanted to snatch those kids down from the slide and yell at them. Of course, I didn't. I gave them the benefit of the doubt (actually, I walked away in anger and Hubby talked me down) and they were actually just curious. They weren't being mean to Miss Kat, or making fun of the way she spoke, they just had never encountered someone who spoke differently from them.

Now to be honest, Miss Kat doesn't have a "perfect voice". She is pretty darn intelligible, and kids never have to have her repeat herself, or misunderstand her, but she does sound different. Add to that that she still has some peculiarities in her grammar, and as she ages, kids do notice. So...what do we say? Do we explain to her that she doesn't sound "normal"? She very easily answers questions about her equipment and is able to advocate for herself and repair situations in which she mishears or doesn't understand, but we have never addressed the "quality"  of her speech.

(While all of this has been quite painful to witness and think about, it is still better than how she was treated when her only means of communication was ASL. Kids were much more cruel then. I remember once when I screamed at a mother because she child said, (and she clearly heard and did nothing about it) "Why can't you talk? Only babies can't talk. You must be a baby. I don't play with babies. Get away from me." Yeah, I FLIPPED OUT over that one. Another time it was "What is she doing with her arms? Make her stop that!" or the adult who told me to "Shut her up!".....)

Our next big summer adventure!

Every year we use the summer as an opportunity to continue Miss Kat's education and to had tons of fun! This year is no different!

Our summer is packed!

First up: A reading camp for deaf kids in upper elementary school. It is being held by a local university that has a Teacher of the Deaf program.

Then: 5 weeks of summer school...and on the week-ends:

1. The big 9 year old birthday party at Six Flags!!
2.  ASL family camp at the State school for the Deaf
3. National AG Bell Conference

Then back to Utah for 4 weeks to visit the family!

National Conference...here we come!!

A few months ago I was made aware of a scholarship opportunity for families who wish to attend the national AG Bell conference. The application process was rather rigorous. We had to have letters of recommendation from an AG Bell member (I am not a member, never have been, and do not currently intend to become one) as well as a letter of recommendation from a professional who could speak to our financial need (because they don't want to be giving the scholarships to the 1%!) I also had to write an essay about our journey and why we felt like we wanted to attend the conference. They asked that the letter be less than two pages....my rough draft was six!

Eventually Hubby was able to cut it down (and shrink the font and margins!) and we sent it off, along with exceptional letters written by the wonderful people at Miss Kat's school. (They wrote such wonderful things...I can not say how thankful I am!) So, I waited the two weeks and got my email...NOPE! We didn't make the cut :(

Well, it turns out that we were first runner up! Another family was unable to attend, so now they have rewarded the scholarship to us!! We will be attending our first national AG Bell conference.

How the IEP went...

It went great! I am so happy to finally be in a place that understands Miss Kat's needs and are willing and able to meet those needs!

So, here is the run down:

Annual Goal #1- To use a variety of four to six word sentences that include nouns, verbs, adjectives, pronouns, prepositions, and questions with 60% accuracy. (The goal then had 6 benchmarks/objectives which are rather complicated because they are based on a particular form that CID uses to track expressive language.)

GOAL MET!

 We are now moving on to the "complex sentence" level!

Annual Goal #2- To improve Miss Kat's pragmatic language skills in social situations and in conversations to 80% accuracy. (The goal had 14 individual benchmarks/objectives!)

2/3 of the Goal MET!

This one we discussed for awhile! The benchmarks that Miss Kat did not meet (she is doing it 50% of the time, not the 80% required to "pass it off") have to do with her bossiness and strong personality. Apparently, she has trouble allowing others to talk (even the teacher!) in class, and often she will interrupt or try to talk over people when she has something to say....not a huge surprise, but we'll keep working on it!

Annual Goal #3- To improve Miss Kat's written language to 80% accuracy. (The goal had 6 benchmarks/objectives. They included her working on sounding out words to spell them independently as well as just capitalization and punctuation.)

GOAL MET!

Miss Kat's writing has improved tremendously this year. We couldn't be happier!

Annual Goal #4- Miss Kat will improve her overall voice quality given teacher prompts with 80% accuracy. (We had 4 benchmarks/objectives for this goal including syllable stress, pitch variation, etc.)

GOAL MET!

The only issue we have with this is that Miss Kat still struggles with using the skills she has acquired when she is overly excited. She tends to throw everything out the window and her speech gets way less intelligible when she gets worked up...I'm sure it will get better.

Annual Goal #5- Miss Kat will improve her articulation skills with 80% accuracy given teacher prompts. (We had 8 articulation benchmarks/objectives. Everything from l,s, and r-blends to voiceless /th/)

50/50 on this Goal

Articulation is tough. It will be something that takes time and practice. This is the speech portion of the IEP, and Miss Kat will be able to improve her speech (since speech is not language, it is just as skill) for as long as she wants to do therapy.

Annual Goal #6- To improve Miss Kat's auditory perception of spoken language in a structured setting with 80% accuracy. (We had 10 benchmarks/objectives. Some were just about audition and others worked on improving her auditory memory.)

50/50 on this Goal

Ever since we left the NICU, we have been aware that there is a very real possibility that because Miss Kat was deprived of oxygen for so long, she could have serious brain damage. It is very clear that Miss Kat has NOT been profoundly affected by that lack of oxygen. However, as she gets older, it has become clear that she has some memory issues. She struggles the most in her "working memory". She wasn't able to meet some of these sub-goals (auditory memory) because of that. Now, it isn't just her auditory memory that is affected, her working visual memory is poor as well. We are brainstorming with the school to figure out some accommodations that will help her in this area.

Annual Goal #7- To improve Miss Kat's phonic skills to 80% accuracy. (This is tied into the next goal.)

Annual Goal #8- To improve Miss Kat's phonemic awareness skills to 80% accuracy. (This is the last year for phonemic awareness, because as Miss Kat gets older, it will all be tied to print now.)

BOTH GOALS MET!

Annual Goal #8- To improve Miss Kat's vocabulary skills to 80% accuracy. (This goal had 4 benchmarks/objectives. They are all related to vocabulary in reading, not in spoken language.)

GOAL MET!

Annual Goal #9- To improve Miss Kat's reading comprehension skills to 80% accuracy. (This goal had 8 benchmarks/objectives. It covers everything from retelling a story, to making inferences, to interpreting characters feelings in a story.)

GOAL MET!

Reading has always been our greatest concern. If Miss Kat never learns to say another word, but is a fluent reader, we have done our job. From the very beginning, we have been completely committed to making sure that Miss Kat doesn't fall into that awful 4th grade reading level statistic. In fact, one of the reasons we chose the school she is now attending is their commitment to literacy. Miss Kat's reading has grown leaps and bounds this year, and we couldn't be happier.

Annual Goal #10-12- To expand Miss Kat's math, science, and social studies knowledge at her grade level curriculum. (These goals cover the rest of the state curriculum.)

GOALS MET!

I am so thankful that Miss Kat's school is so thorough and takes into account all these areas of development. They are truly amazing. We haven't had to fight or worry or push to make sure she is getting the services she needs.

Woo Hoo!

(Next up, standardized testing and audiology!)

Headed to our IEP

We are walking out of the house, headed to Oral school, for Miss Kat's IEP meeting. It is our first IEP having had an entire year at the school. We will review her goals, her language and her standardized testing. This is a big deal because it will reflect whether or not she is making sufficient progress to close the gap, and whether or not moving out here was worth it!

Read this today...

"Although the development of spoken language is a major purpose of implantation 
(Geers, 2006; Incesulu et al., 2003), not all parents value this outcome to the same extent. 
Archbold et al. (2006) reported that 25% of parents who responded to their survey did not 
expect their child to talk after implantation, and 13% felt neutrally. Furthermore, 73% of 
parents agreed or strongly agreed that signing support is helpful for a considerable time after 
implantation."


Very interesting! Truth be told, be would have been in that 25% when Miss Kat was implanted. We never expected her to learn to hear or speak.

Children of Deaf Adults

Tonight we headed out to a Deaf community party (which we do about once a month...gotta keep up with our signing!) We played some fun games, and Miss Kat really enjoys hanging out with the other kids. They are, of course, all hearing, but have Deaf parents. (There have been a few deaf kids that have come in the time we have been going, but mostly, just CODAs.) Tonight was no different, Miss Kat participates in the games until she and the other kids grow bored and they head off to another part of the room to play hide and seek and tag. So, she is chasing a friend around and one of her processors go flying off. Another kid picks it up and hands it to her, and they all look at it and ask "What is that for?" Miss Kat explains that it is her implant and she uses it to hear.....uh...so, you guys have been playing together for 2 hours and you didn't notice that she was deaf? It took her showing you her processor and actually saying it for you to figure it out?

What a world!

"Why can you hear without implants on?"

This was the question Miss Kat posed to us last night, as she was laying down at bedtime. It is a very important question, so we spent some time going over it.

First, I pulled up this picture

I then explained how typical hearing works. I said that the sound travels in the ear, vibrates the ear drum and then stimulates the hair cells ("Yuck, I have hair inside my ear?", "No, it just is called hair, it isn't actually hair", "Oh good.") and then the cochlea sends that information to the nerve. 

Then I showed her this picture

I said that Mom and Dad have hair cells like the picture on the left, but hers don't work well, like the picture on the left. I said that since her hair cells weren't able to hear, we got her an implant.

Then we looked at these pictures

We talked about the different parts of the internal implant and how the electrode is inside her inner ear. Then she wanted to better understand how it got there. She asked about the surgery, and what exactly the doctor did to get the implant inside her ear. So, we watched this

Miss Kat thought that the surgery was "gross" and that she was glad that she didn't have to do it! (Guess CI surgeon is off the list of possible vocations!)

Overall, I thought that she understood very well, and asked a lot of great questions. I know this will not be the last time we discuss the matter, but she wasn't upset or sad at all. She knows that she is deaf and that Mom and Dad are hearing. She knows lots of Deaf and deaf kids and adults, but she also knows that most people she encounters in the world are hearing, and she isn't and never will be.

ClearVoice!

Miss Kat had a MAPing yesterday, and she is now using HiRes S120 and....ClearVoice!!

At first, she really didn't like it. Ok, she said "I hate it". That was not unexpected. She doesn't deal with change well! In fact, she refused to wear it out of the audiology booth. Again, that's fine. When we got home, we discussed it. We told her that they changed it so that she could hear better when it was loud. She understood, but still didn't love the idea of wearing it. So, we made a deal. We would work it just like when she went bilateral. We changed the program at bedtime and let her lay out on the couch with us. She was able to listen to the TV, and have her brain process the sounds, and get used to the input, but she doesn't actually have to hear it.

It worked great. This morning she put them on with no fight at all. In fact, her teacher said she didn't have any idea. So, now we wait for her to acclimate and do some testing (her baseline was 88% on the LNT) and see if she improves!

Science Fair

Today was Miss Kat's first science fair. For her experiment she wanted to change the color of carnations. Her hypothesis was that it wouldn't work. For her process, she had a control flower, and one with paint, food coloring,  egg dye, and used magic on the last one. She'll tell you all about it:
.

Danny Boy

This evening we played this video clip for Miss Kat.

She thought it was hilarious (though when Beeker hit the high note, it seemed to be a little uncomfortable). So, to explain the joke, I then played this clip



We made it 33 seconds before she burst into tears! She said that the song was too beautiful and sad! I was thunderstruck! Talk about musical appreciation! Wow...

Miss Kat's Thoughts on AFA

AFA crossed the line, in my opinion, during their protest at EDHI last week. They picketed at  the local schools. I believe this is inappropriate for many reasons. The first is that they were being aggressive. They were not expected at the schools. If they had made arrangements to visit the schools, they would have been welcomed. I know that because members of DBC had recently toured CID and expressed to me how impressed they were by the school and the kids. Second, at Moog, (you can see it in the video) they approached the kids. It is inappropriate to approach other people's children REGARDLESS of your hearing status! And lastly, this is one sure-fire way to make sure that parents run as far from the Deaf community as possible. You are showing that you are not welcoming, that you are angry, that you do not support our choices for our children. Parents from Miss Kat's school always ask us about how we are treated in the Deaf community and I have always been very open. I have said that in real life, the Deaf community has always been welcoming and supportive. That we are never had them be rude or say negative things about our choices for Miss Kat. (Unfortunately, the same can not be said for online.) But, this is apparently isn't the case for everyone. These people are seeking out opportunities to judge parents for their choices. Instead of being open and supportive, they are protesting against schools that these parents have lovingly chosen as being the best place for their child to learn and thrive, without bothering to ask why. Again, this is the best way to make sure that parents NEVER choose to expose their children to the Deaf community.

So, Miss Kat told me that she saw the protesters outside her school. She said that she asked her teacher why they were so mad. (She said that her teacher said she didn't know.) Miss Kat also said that her principal was scared. (How sad.) And Miss Kat's conclusion was that the protesters were jealous, that they wanted more kids to go to their school instead of her's. She was sad for them.

Here is a great blog from another mother of a child from one of the local schools. She goes over the issues beautifully and I have nothing more to add to it!

http://babyears.blogspot.com/2012/03/deaf-vs-deaf-debate-comes-to-head.html

My report from EDHI (part one of many!)

First of all, I had a great time!!! I am so glad that I had the privilege to attend the conference. I learned so much, met some great people, and got to network some for Hands & Voices!

The first thing I learned was in the opening plenary session. It was by ChristineYoshinaga-Itano. The session about sharing the data from some longitudinal studies. It reviewed standardized testing and language of deaf and hard of hearing kids. The data shows some really great things!  The first was from Colorado. They followed kids from 3rd to 12th grade. The goal was ONE YEARS GROWTH IN ONE YEARS TIME. And 40% of kids made just that, and actually, 40.8% made GREATER than that! So, that means that over 80% of kids in Colorado are making at least adequate, age and grade level appropriate progress. Woo Hoo!

She also discussed language  measures and outcomes. These were assessments given in 8 different states to over 250 kids. They looked at expressive language, comprehension of complex language, and vocabulary. It was more great news! Almost 80% of deaf and hard of hearing kids scored in the normal range for expressive language, 75% for comprehension of complex language, and almost 60% for vocabulary. (Vocabulary is often  the weakest point, because deaf kids struggle to pick up new words incidentally.)

I was really impressed with this information. That means that if we get our kiddos age appropriate with their language, and then continue to have one years growth in one year, we will have deaf students graduating with language and literacy skills commiserate with their hearing peers...which is, of course the goal!

And  before people go crazy asking the question, this study included both ASL and spoken language users. There were several Deaf schools that were study sites, and some public school programs.

I loved getting some positive news! It turns out that this generation of deaf kids are actually doing very well!

EHDI

I am lucky enough to be attending the national EHDI conference this year, and I am VERY excited. There are so many interesting and informative sessions that I had trouble narrowing down which to attend.

Unfortunately, there are going to be some protests outside. That disappoints me. If those protesters had taken the time to actually investigate the conference, they would see that there are MANY pro-ASL, pro-bilingualism sessions. Also, if these people had ATTENDED the conference, they would have the opportunity to give feedback and help IMPROVE the system, rather than just railing against it. This kind of waste and anger makes me sad. I wish that we could work together to improve the world for our kids instead of standing outside and yelling at people. 

M. Kat Shyamalan

This is the premiere of Miss Kat's film debut. She wrote, directed, and co-starred as well as handling all the cinematography and editing duties. 

Bilingual Bimodal Webinar

Bilingual Bimodal Education Webinar 1

I watched this and I loved it! I hope this is the direction Deaf schools are headed! The information was great and I can't wait to watch the next one!

(And now we have a name for Miss Kat's language progress...sequential bilingualism!)

Cute phrases that have popped up...

Miss Kat came home last week and after Daddy thanked her for something she said "Piece of cake!" Tonight when it was time for bed, she said "Bummer".

Also, she has been telling us to "zip" and signing a sort of "zipper closing across the mouth", when she thinks that we are talking too much. We asked where she got that and she answered that her teacher says it at school when she is talking too much! Ah, the joys of having a social butterfly!

MyLink+

Today we received Miss Kat's FM system!!! We order it through insurance and were lucky enough to get it covered. (We have no need for it at school, since she is in a acoustically treated environment and in classes with no more than 3 other students.) We wanted it for things like church, noisy restaurants or even in the car. She ADORES it! We tried it out in the gym this morning and then we hooked it up to the TV this evening. We are going to work out how to pass it around for church, and other situations, but right now she is learning how to play chess with Daddy in the living room....things are great