Gee-gee Bells

Miss Kat wanted to sing "Jingle Bells" tonight, and wasn't going to let something as trivial as not knowing the words stop her! So, Daddy found a karaoke video, and this is her working her butt off to try to read the words fast enough to sing it. I would love to caption it, but it is incomprehensible!

Miss Kat's Thanksgiving thoughts

We had a rather non-tradition thanksgiving this year. It is our first away from family since Miss Kat was a baby. We went to the zoo as a family and got to see them feeding the animals, and then we came home and had our version of Thanksgiving dinner. As we were sitting there eating dinner, we were discussing what a typical Thanksgiving dinner would be and she gave me this insight:

"I don't want to eat animal meat. Turkey is healthy food, but I don't want it. It is terrible. I love animals. I want to save them."

Miss Kat has been talking along these lines for several weeks. She has made it very clear that she believes that eating animals is unacceptable. We were extended several invitations to spend the holiday with friends, but each time she asked if they would be having turkey, and when I replied yes, she would say that she didn't want to go.

Later at the dinner table Miss Kat told us a funny little anecdote. (She expressed it in both spoken language and sign. She used a bit of each, preferring whichever language better expressed the idea in the story.) I will attempt to transfer it into written English here:

A little girl went walking in the woods.  She was very hungry. She spotted a wild turkey wandering across her path.  Because of her extreme hunger, when she saw the turkey, it appeared (in her mind's eye) as a cooked and dressed Thanksgiving turkey.  She chased the turkey down, seized it and gobbled it up whole. She then continued on her path, satisfied. Before long, she began to feel a touch of indigestion and started burping. Along with the first burp, came a feather. With the second, two feathers. The last one was a huge, rumbling belch accompanied by one hundred feathers!

Funny, isn't it! I wish we had videotaped it, so the world could see her face expressing the ideas. Miss Kat is such a creative, expressive kiddo. I know for sure that she is what I will always be most thankful for.

Deaf Families with Cochlear Implants Study

I thought this was important and wanted to spread the word: The ASL-Cochlear Implant Community: Deaf Families with Cochlear Implants Study

Halloween Jokes

Miss Kat learned some Halloween jokes last week and got to use them tonight when trick or treating. She worked really hard to memorize them. The jokes earned her literally SEVEN pounds of candy (we actually weighed it!)

$25.31

Something incredibly cute happened this week-end, and I wanted to share it with the world 

Miss Kat came up to me and told me that she wanted to sell candy. She had made a sign, selling it for 1¢. So, we did it. We set up a little table, made a bigger sign, and sold salt water taffys  We sat outside for about an hour and a half, in the most beautiful fall weather, listening to music and waving at the cars going past. Miss Kat sold approximately 33 pieces of taffy and made $25.31!! What a sweet gig!  She went to Target and bought a cool remote control car and then got herself a Happy Meal. I just want to send some love out into the world and say how great it is to see such generous people in the world. Everyone who stopped was so sweet to her and really went out of their ways to make her day. (Even those who didn't stop, I think she brightened their day.)




Oh, I also wanted to update about our church situation. We were still struggling with our local church, but thanks to another mom, we found a new home.  It is wonderful. Miss Kat makes the 6th deaf kid! That is more than when we attended the Deaf church back in Utah! The oldest kiddo is 12 or 13 (and they have been attending for at least 6 years) and the other families have really blazed the trail for us. The leaders "get it" and are more than willing to go the extra mile to make us and Miss Kat feel comfortable.

Our life is really great.

Behind enemy lines?

I need little advice from the wise (and moderate) world out there!

We are thinking about heading to a Deaf community event here pretty soon. It is being hosted by a local organization that we have no experience with yet. That is all fine and dandy, we love meeting new people and our experiences with the Deaf community (in real life) have never been anything but positive.

But, there is a catch.

One of the leaders of this particular organization is very outspoken against my daughter's school, spoken language and cochlear implants. I'm concerned on a couple fronts.

First, I worry that he might recognize Miss Kat from my blog and choose to "out" where we live. I have chosen not to disclose where we live and what school my daughter attends for safety reasons. It is a very small school and it just worries me. So, if that were to happen, I think I would have to make my blog private, which is something I am trying to avoid.

Second, I don't want a fight. I just want to give Miss Kat the opportunity to hang out with other kids who sign and fluent ASL users. I want her to always feel like she is a part of this community, no matter how well she hears and speaks. She is deaf and always will be, so I want her to retain her ASL and her connection to the Deaf community. While I have never had anyone be negative about her CIs, (at least not to our face!), the issue is with her school. As you know, Deaf people inquire about your (or in our chance, our daughter's) school as part of getting to know you. I worry that because she attends this particular school people will be negative.

I really hope this isn't the case. I really have never had anyone be mean or nasty to us. We usually explain a little bit about our story, (that she has a progressive loss, that we started with ASL and a bi-bi school, but then got a CI and are now focusing on English) and they see that we are a moderate family who has chosen spoken language in addition to ASL. That we sign, that Miss Kat signs, and that is generally "good enough". This is actually the first time that I have ever hesitated about going to a Deaf community event.

Am I being overly cautious? Is the world still moderate? Even in a city with an oral deaf school?

It's broken

It was bound to happen at some point, we knew it would. I'm surprised we made it this long, to be honest.

Last night, as Miss Kat was getting ready for bed, something happened. Daddy walked into Miss Kat's room and she was up in her bed. He asked her to give him her implants, (so he could put them in in the Dry & Store) and....crap.

Miss Kat's right processor was tied in a knot and hanging from the side rail of her of her bed . Argh, that isn't exactly the respect for a $7000 device we like, but things actually got worse. Upon further inspection, it was broken. The connection between the processor and the headpiece had been snapped and the tiny prongs were still stuck inside. Oh, and did I mention that we just passed out of warranty? 

We were upset to say the least. What on earth was she doing?! WHY was the implant tied to her bed??? And what the heck happened?!?

So, we got Miss Kat out of bed and we had a serious discussion. We explained that we were very upset and we wanted to know what had happened. She was very penitent and told us that she had taken her processor off and was crawling around in her bed and had accidentally leaned on it and it had snapped. Alright, it was kinda her fault but it was a fairly reasonable explanation. And the hanging? Well, now it was broken and she couldn't put it back on her head! 

So, we explained to Miss Kat that the only two places the processors should be are either on her ears or in the Dry & Store. If she is taking them off, she needs to hand them to an adult or take them and put them away herself. We thanked her for her honesty and told her we loved her and she went back to bed.

In the meantime, Daddy got out his pliers and was able to pull the little piece out of the processor, so all we need is a new headpiece! (Oh, and we discovered we still actually have 2 months left on the warranty). We actually made it to nearly 3 years without kid-related damage. In retrospect, we actually should be celebrating that! 

We were driving home tonight and from the backseat we hear "I love pizza." Oh really? Miss Kat is actually a very picky eater so for her to request pizza would be quite unusual. She eats mostly fresh fruits and veggies and a few basic carbs. So, we followed up, "If you want some pizza, I'll get you some pizza right now!" To which we got this most appropriate and hilarious answer, "I want just cheese. NO KETCHUP UNDER THE CHEESE! Just cheese. If it is from the restaurant, I will like it. If it is cooked at home...YUCK!" Hmmmm, not a fan of the sauce then. (We actually already knew that since she orders pasta without sauce.)

Alright, Pizza Hut "Book-It" pizza will be ordered JUST CHEESE!

The original post.

So, we got a really cool note from Miss Kat's school on Friday. All the students in her school are going to be receiving FREE BIKES from a local charity! How awesome is that?! We will attend a special ceremony where they give each kiddo a bike, picked out just for them (based on gender, age, and height). Isn't that just really cool?!

This isn't the first time her school has had special perks either. She got the chance to meet some of the Harlem Globetrotters as well as special field trips and even free books for Miss Kat (and all the students, of course) during their literacy fair. Pretty cool!

Also, the other day we were walking out to the car and Miss Kat turned and looked at me, she said "Hey, I hear crickets." WOW! She not  only heard them, she knew what the sound was, and what animal was making it. Not too shabby.

We have a meeting next week with the audiologists, just to get a plan together for her MAPping. They attended a big cochlear implant conference over the summer and they want to make sure we have Miss Kat in the best possible MAPs. (And, actually, we have been having some trouble with her right side processor. We sent it in last week, and the new one came, but when we put it on this morning, it wouldn't connect. We tried switching out the headpiece, but that wasn't the problem. I guess we'll send it in again. Luckily she has a back up for both sides, so no "off air" time).

Also, within the next month or so we will have her next IEP meeting, since she met ALL the goals on her IEP from February. We need to write all new goals. Not just language and auditory skills, but all her academic areas as well. She did her state testing (same as hearing kids) and we got the results back just before school ended. We were very happy with the results. She moved up to the next "level" (her school is ungraded but the kids are grouped according to ability).

And finally, we are spending Labor Day at the amusement park!!! We are taking Miss Kat and one of her friends from school (well, technically she already graduated, so she is mainstreamed, but a former schoolmate) and are headed out to have some fun! Miss Kat is so excited!

I won't stop.

I have been wanting to write about something for a little while, but I have paused. I wanted to share something that happened, but I was afraid. I wanted to memorialize something cute that happened with Miss Kat, but I was worried about the reaction of some people. And you know what, I shouldn't. I shouldn't have to edit myself because some loud, angry people will call me names. Why should I care about the opinions of people that I don't even know, who don't know me, or my child? Why should their nastiness cause me to edit what I write? I am not writing this blog for them. This blog is not public so that they can twist my words against me, write posts of their own about me, saying I'm a...(insert offensive overblown term here).

These are members of a community that is supposed to welcome my family and my child. A community that claims to love my daughter and want nothing but the best for her...but, this angry, vocal minority seems to only want her success on THEIR terms. They don't want to accept that perhaps HER path, HER life will be different from theirs. They can not open their minds enough to see the future. They can not see past their hurt and pain to see what the world looks like to kids like Miss Kat. I totally get that there are still kids that are falling through the cracks. I swear I do! But, why does that mean that parents who ARE involved, who ARE making sure their children have language, communicate well, attend good schools, have friends...THRIVE are still getting attacked.

I just don't understand how this helps your cause. How is this turning more families towards ASL? How is this showing the benefits of early language in deaf kids? How is this helping to build better Deaf schools? Raise test scores? Improve literacy? How does hurting parent EVER help deaf kids? I don't know, and frankly, I'm really done caring. Write hurtful comments. Make blog after blog "calling me out". Call me an audist, say I'm obsessed with my daughter's ears, tell me that I'm a Nazi, that I'm killing her spirit. I am done. I KNOW you are wrong. I see my daughter every day. I see the joy when she skips to the front door of her school every morning, and how every afternoon we have to coax her to come home. I see her playing with her friends, I see her giving her teacher, principal and speech therapist big hugs. She tells me that she is happy. Why should I believe you over my child?

I have been advised to make my blog private. They say that it will stop the harrassment. But you know what? I don't want that. I don't want to hide. I want other parents to get support from us and the things we have been through. There aren't very many blogs about kids who have ever used ASL, and there certainly aren't many about late implanted kids. I LOVE reading about other kids, and I know that it helps when I feel down, to see that there are other dedicated, loving parents out there, helping their kids conquer the world. I hope that is what I am to other families. And if I go private, no new families will ever get that chance. So, here we are. I'm not going to stop, and I assume neither will you.

So, good luck, and have a nice life.

English is part of bilingualism too!

As any reader of my blog knows, Miss Kat currently attends a school that focuses on spoken English as the language of communication. The school does have a heavy emphasis on language (NOT speech alone, but the language behind the sounds) but it also teaches math and science and emphasises reading and literacy easily as much as language.

We believe this school is the best place for our child right now. Would it have been the right place for her three years ago? NO WAY!! Will it be the right place for her in three years? Who knows. But right now, it fits.

As I have said many times, here on my blog, on other's blogs, all over the internet, as well as every day in our lives, our family's goal is for Miss Kat to grow up BI-lingual. We want her to have the ability to use ASL AND English fluently.

 For the first five years of Miss Kat's life, her only language was ASL. She did not have access to spoken English, and her ability to understand print was very limited. After her cochlear implant, her ability to access and use English dramatically changed. She was able to understand and use spoken English as a means to understand others as well as communicate herself. As that language expanded, we had some tough decisions to make. We decided to use the years following her implant (while she was still young and better able to learn language AND since all the research shows that the first 3 years post implantation yield the most language growth) to learn English.

Does that mean that we have abandoned ASL? Of course not. Does it mean that we "look down" on ASL users? NO WAY! Does it mean that my daughter is "better" than non-implanted kids? Uh...NO! Does it mean that we have rejected ASL and the Deaf community? Not in a million years.

The truth is, if a child is going to be bilingual, they HAVE TO learn both languages. They have to be immersed in both languages. They have to have the opportunity to use and be around people who fluently use BOTH languages. That means, for my child, she is going to have to be in a spoken English environment.

I have had MANY people say what we are doing is child abuse. They say that ALL deaf children MUST be in an ASL environment for school, it is the only way they can be assured access to the curriculum. The same people insist that the parents must ALWAYS use ASL in the home. Otherwise you are cutting your child off from the communication in the home, and that will lead to the child being left out and feeling like they are not a part of the family. You must also make sure to obtain interpreters for church and extra-curricular activities, doctor's appointments and special events, because you want your child to have the same access as hearing kids............

Ok, so when and where do they use spoken English? Can't do it at school. Nope, not at home either. Out in the community you want to make sure they have an interpreter, so that is out too.....Where does that leave us? Speech therapy? Come on, you can't learn a language in an hour a week. No one would advocate for a deaf child learning ASL through a therapy model, so why should English be done that way?

BOTH languages need to be valued. BOTH languages need to be used. BOTH languages need to be taught.

The Differences, #1 vs #2

Since we are approach the anniversary of Miss Kat's bilateral implant, I thought I would write a blog about the differences between our experience with Miss Kat's first and second implants.

First, it was easier for us to get Miss Kat's second implant. We had to change insurance to get it, but we just waited for open enrollment and switched, we had it all scheduled before we even changed over. The first time around there was a lot more resistance. Our former audiologist was against it, they had to have a meeting about it...all because she signed (Well, I guess they also objected because she was "so old", but her loss was progressive, so she never even reached profoundly deaf). But since Miss Kat has been a very good implant user, and she has next to no speech discrimination with her hearing aid, the second one was a "no-brainer".

The actual surgeries went very similarly. They were at different hospitals but the same surgeon. She was the first surgery both times (because we weren't at the children's hospital) because she was the youngest scheduled for the day. She went into surgery very well prepared and not scared (Thanks Versed!) and both times the doctors said she was downright helpful in the operating room (hoping up on the bed, putting on her pulse ox, and picking her flavor for gas). Daddy and Grammy and I just sat around playing cards waiting for the doc to tell us that surgery went well and we got full insertion of the electrode. (Which happened both times!)

Miss Kat woke up pretty crabby both times, but she was OK by the time she was discharged from the hospital. The first time we didn't have a TV in the room, so she took a little nap, but was overall in a better mood the second time around (Thanks here goes to Sponge Bob!) Both times she threw up right as we were packing up to leave...luckily they let us leave anyway.

The recovery went well both times as well. Miss Kat took her prescription pain meds for the first day, but by the second afternoon the bad taste outweighed the pain, so we switched to regular Tylenol and ibuprofen. She took a nap and ate and then was nearly back to normal.

Her implants exactly line up! Her incision is MUCH smaller this time around. It is closer to her ear and it looks like all the other kids incisions. Her first one was WAY bigger, and he shaved nearly half her head!

The activations were very different. The first time she was curious, but really didn't know what would happen. The second time around she was an old pro at MAPing. The first time she didn't even classify the sounds she heard as "hearing" and pretty much ignored the input in the office. The second time she responded well and we were able to get a good MAP set, very quickly and she was able to express what was going on.

The rest of those first two days were very different as well. On the way home from her first activation she suddenly became very interested in all the new sounds she could hear. She walked around knocking on things and making sounds, for the joy of hearing them. With the second implant, she just wanted it off! She told us that she couldn't hear with it and that it sounded terrible. The difference between the two was the quality of input that she had had with the first implant since activation. Because she couldn't hear well with her hearing aids, this all new input coming from the first CI was amazing and fun to explore. The second CI provided the same input at activation, but this time she KNEW what hearing well was, and her brain was used to understanding sound and so, the new, scrambled sounds actually sounded bad, and she wanted to go back to having just the clear sound (the old CI).

She struggled with putting the implant on, first thing in the morning, with both. It lasted around a week each time. The first time we dealt with it by adjusting her volume wheel to provide a bigger variation in loudness between all the way down and "noon" (where the wheel is meant to stay). Our audiologist generally programs a 20% increase in volume using the wheel, but for us he set it to 50%. That way she could put it on first thing in the morning and not be shocked by the sound, but then, when she adjusted, we could jut turn it back up. The second time around, she just put her old device on first and she was ok.

As I said before, the adjustment to her second implant was rough. She didn't like not being able to understand speech with it. She would say that it was just "beep, beep, beep". She was frustrated, she wanted to have the same clarity that she had with her first, and being a child, she wanted it NOW! She very much did not want to wear the second side. But, we explained that if she wanted it to sound better, she had to wear it. So, we devised a plan to have her go to sleep wearing the device, and listening to music or books on tape, anything to allow her brain to continue to get input, and allow her to get the stimulation, but since she was asleep, it didn't bother her.

After about 2 weeks, she was fine, she had "bonded" with the new device and would always wear them both. At one year out, she hears equally well with both sides and doesn't express any sort of preference.

I'm very glad that she has two implants. Her reaction to the activation of the second (and actually, the first as well*)clearly shows what poor input she was getting from her hearing aids. If she had ever been getting good auditory information from her hearing aids the CI wouldn't have been such a shock to her brain. But, alas, as we know, she hadn't.

(*She had obviously never heard the sounds she was discovering with her first implant. Also, she SHOULD have thought it sounded weird and like beeping the first time too. But she didn't, she liked it. Why? Because even the beeping was better input than her hearing aids had been.)

So, her hearing has improved with this second implant. Her language has really blossomed. Her grammar and articulation has improved. All around, we are very happy we went ahead and went bilateral. (Oh, and of course we couldn't be happier with the first!)

Wouldn't the word just be "AUDIST"?

I have been perusing the blogs of late and something has been driving me batty. This word "audistic". That word makes no sense to me...linguistically speaking.

The word "audism" is derived similarly to words like "sexism" and "racism", correct? Well, when someone makes a statement that is derogatory to a particular race, that statement is "racist" and that person may be a "racist". Same with the word "sexism". The statement would be "sexist" and the person "sexist" as well.

Ergo..a statement would be "audist" not "audistic". The person would also be an "audist".

If there is a linguist out there who would like to correct me, feel free, but I think this makes more sense than "audistic".

Interpreting

Today, we were sitting in church, in the front, as we always do (in front of the interpreter) and Miss Kat had her favorite teddy bear. When it was time for the prayer, Miss Kat arranges her bear so he can "see" the interpreter. When I ask her about it, she says "He is Deaf. He hasn't gone to the doctor yet.  He might get an implant, or a hearing aid, he doesn't know yet. But now, he needs to sign, he can't hear. So, when you talk to him, you need to sign."

Cute, isn't it!

Then, when we got home, she was watching a video and I was sitting on the couch. She went up and sat next to the tv. She asked if she could sign for me. I told her, "Sure". She then interpreted the rest of the movie for me. She did a pretty good job! She even signed "music" when there was background music and indicated when there were noises such as stomping. Maybe she has a future in interpreting (right now she says she is gonna be a teacher at her oral school!)

This is really ridiculous

I wrote a simple post about my child hearing a simple sound and look at the ignorant mess it turned into.

Fact #1- Miss Kat has residual hearing. It has been measured previously, I just haven't bothered to dig the paperwork out (because it doesn't matter!)

Fact #2- Miss Kat has a progressive loss, which means she is more attuned to being able to hear sounds that exist around her. She has had the ability to hear at normal levels in the past, so she knows what it is like to hear sounds, even faint sounds.

Fact #3- Miss Kat has an auditory brain. Because of her previous hearing experience, combined with her excellent hearing through her cochlear implants, Miss Kat's auditory pathways in her brain remain auditory. They have not switched over to visual, and (as the research shows, more often) tactile input.

So, when a profoundly deaf from birth person says they FEEL something, I am positive they ARE feeling it. Their brain has converted all those auditory pathways over to process tactile and visual stimuli. But, that isn't what happens with kids who have very good, early auditory input. Their brain uses those pathways to process auditory input. They do not have the same brains that Deaf adults have.

Be pissed, write me nasty comments, I really don't care. But at least understand the difference before you do it.

Oh, and P.S.-
The reason this blog is mostly about her "ears and mouth" is because it is a blog about our journey through the experience of raising a deaf child who know has cochlear implants. It is not about our daily life. I don't generally blog about going to the dollar store and having her figure out what she wants to buy and then count out the money to the cashier or how excited she was yesterday when we surprised her with new Hello Kitty clothes for summer school, because none of that relates to my goal of this blog. I am writing about the experiences that relate to her hearing loss, her new found hearing with cochlear implants, her journey with spoken language and our experiences with ASL and the Deaf community. Her life is so much more than this blog.

Residual Hearing Continued

So, I checked to see if it was vibrations she was feeling (instead of hearing). First, I stood in the tub and did it...nothing. So, then I had Hubby stand in the tub....nothing. So, then I had Miss Kat stand out in the hallway, on different floor material, and tried again. Yep, she still heard it. Finally, I had Hubby stand in the hall, on a pillow, holding Miss Kat, with her back to me. Dropped the lid three more times, she heard it each time.

Guess she IS hearing it. Maybe I'll get the audiologist to take her in the booth and see what they find.

Residual hearing? Really?!

Miss Kat was in the bathtub today and something crazy happened. I dropped the toilet seat closed and Miss Kat startled. I was surprised, so I did it several times (with the shower curtain closed, so no peeking) and she pinpointed every time.

The sound wasn't very loud, so I was very surprised. I know that she still had a little hearing left, especially in the low frequencies but this was way less than 80 db.

Hmmmm....

***SHE said she heard it, not me. She told me that it was a THUMP and imitated the sound and said it was loud.***

"SING it for the world"

On Miss Kat's last day of school, they had a graduation ceremony for the kids who were moving on. It was amazing, inspiring, and I cried the whole time. The graduates gave speeches about their days at the school, where they are going now, and what they want to do in the future. Every single graduate spoke. It was beautiful.

On a lighter note, the primary department also sang two songs. It was grand. Here for your viewing pleasure are "By the Sea" and "Guacamole".

Neptune Tech Specs!

So, you can peek at this here, or hit that first button on the preview and see it full screen.

Important points that I noticed:

First, and very important...WE HAVE MEASUREMENTS!!! The processor is 1.04x0.74x2.5 inches....that is bigger than we had imagined.

It says there is a rechargable battery, that's good.

It sayd there are three program slots PLUS one for mic testing! WOO HOO! We had been giving up one slot for test the mics since Miss Kat was activated, so this will be nice.

It appears that the controls are removable. I think you are supposed set it, then remove that piece for wearing.

I read that there is a shirt clip, armband and lanyard as wearing options.

Also, it appears that there are two headpiece choices, one "universal headpiece" and one waterproof "aqua-mic" for swimming.

And most important, there are two pink options! (Along with nearly a dozen others.)

Neptune Tech Specs 20110420[1]

The problem at ISD (and USD and all bi-bi schools)

Here's the thing...if you want students, you have to attract hearing parents. If parents don't want their kids at your school, your school will close.

So, how do we balance ASL bi-bi philosophy with the need for fluent spoken language services? By default a bi-bi school is voice off. It HAS to be. So, how do we give the kids the intensive, immersive spoken language services that they need to develop open set, fluent listening and spoken language? How do we immerse a child is two totally different languages, languages that by definition can not be used together? How do we value spoken English and ASL equally? How do we give them equal time? How do we ensure that our kids are fluent and age appropriate in both?

I hear a lot of people talking about how people are trying to turn ISD into an oral school....I doubt it. But, if it is true that they don't allow spoken language in the classroom (which, in my experience is very likely), they are NOT meeting the needs of a HUGE segment of the deaf children.

I hear a lot of accusations, but absolutely no solutions...

FOUND!!! AB Neptune brochure!

Okay, here's what I know. The entire processor is only slightly longer than a AAA battery or approximately the size of an iPod shuffle. It is a completely new style of implant. It is not a behind the ear processor. You can wear it anywhere; you can pin it to your shoulder or even pin it to a hair barrett. There is no information on a rechargeable option. It will be submitted to the FDA within a month or so. That's about all I have. They're trying to keep it mostly under wraps. Brochure follows:

Overheard! (Huge AB news!)

First let me tell a cute story and then we will get to what I hope is HUGE news!!!

I was talking to Miss Kat in the car on the way home from school last week. She was watching a DVD and was struggling to understand me from the backseat. She said "Hold on, I can't hear you because of the movie." She then proceeded to turn the volume all the way down and then said "Go ahead." What a smartie! She knew she was struggling, knew why, and then remedied it. (As soon as I was done, she turned the volume right back up.)

Ok, the reason for the post!!!! Check out this post on Hearing Journey! WATERPROOF PROCESSOR!!!! No information is really available at this time, but AB has trademarked a processor by that name and they have just relaunched their internal device along with a new website....maybe the cat is out of the bag and they will talk! I am so excited! Miss Kat and I went swimming yesterday and I was thinking about how annoying it was to have her not be able to hear me and I started thinking about looking into the ways to wear a CI while swimming, but maybe we can wait!

WOO HOO!

ALL GOALS MET!!!!

Today was our year end conference with Miss Kat's teacher and principal. We met to discuss the IEP that we just wrote up. Miss Kat has made tremendous progress in the 4 months that we have been here. In fact, she has made so much progress that....we have to write a new IEP!! She met the goals!!!!

I could not be more pleased! She is catching up! This school expects her to excel, and then they actually provide the services that will help her do just that. Imagine that!

We are re-doing her comprehensive language testing first thing when school starts up again and we hope to see objective improvements in those scores as well. We also had the opportunity to look at her standardized testing scores and we are able to match her with a group and a curriculum for next year with those.

Everyone is tickled pink (including Miss Kat, who adores school and her teacher and her SLP). This was clearly the right decision. It is the first time we have had an appropriate IEP, tied with great services, and look at how high Miss Kat can fly!

My comment on the Salt Lake Trib article

Article in question

I am so sick and tired of all this stupid fight. I have a daughter who has ASL as her first laguage but now uses listening and spoken language. She hears through a CI.


JMS has great teachers and a lot a community support. They also have an uphill battle. It is very difficult for a person to learn to read and write a language that is completely foreign to them, as English is to an ASL user. It is a totally different language, that is why there is a struggle. Phonics is impossible for someone who doesn't hear, therefore reading must be learned through memorization, which is another hugely daunting task.

And, in my personal opinion, ASL DID affect the acqusition of English for my daughter. ASL is not English, and she "spoke in ASL". She struggles with grammar and the word order of English. Also, having a delay in learning phonics has affected her reading skills.

But, I completely disagree that USD has a great LSL program! Perhaps in PIP and preschool, but our experience in Elementary school lead to moving 2000 miles away to get a real program!

The truth is that there are very successful adults in BOTH camps. The key is involved parents. It is flatly untrue that all these oral kids are going to grow up and join the Deaf community. The truth is that less than 1% of people with hearing loss sign!

CIs have truly changed the face of deafness. Our kids hearing within the normal range and are able to understand ALL sounds in spoken language without lipreading, this was NEVER possible in the past. Don't believe us? Ask the kids implanted as toddlers in the 80's, they are all grown up now!

So, in conclusion, STOP THE WAR!

ASL= CIs off?

Someone asked me in the comment section of a previous post if, when we take Miss Kat to a Deaf event, we took her implants off.

Answer- No, we never do. Why would we?

That seems like a very odd question to me. Why would she need to have her implants off to communicate in ASL? She is deaf with the implants off AND with them on. What benefit would there be to taking the processors off?

Is there something I am missing?

**Edited to add: When we are at a Deaf community event, I do like her to wear her CIs, not just for the linguistic and sound awareness opportunities (which is a major reason, no doubt) but also because I see it as a chance to be an ambassadors for hearing parents who choose implants for their children. I can show them that we parents are responsible, loving people who choose implants not because we hate deafness or don't accept our children, but that we want to provide additional opportunities and avenues of learning. Plus, they can also see that kids with CIs can listen and speak AND use ASL.

So, again, I see no reason at all NOT to wear the processors. (It's not like if she doesn't wear them it somehow erases the fact that she has the internals in her and that she prefers to listen and speak.)

The Deaf "catch-22"

So, I was at the library yesterday and I was walking by the "Parenting" section and I saw this book: The Young Deaf or Hard of Hearing Child

Of course I was intrigued, so I checked it out.

Now, I'm a little fed up.

I am reading the chapter on "The Deaf child in the Family" and they have the obligatory interviews with Deaf college students. The kids say the same thing they always say "I was left out", "I hated going to family events", "I never understood what was being said", but here's the kicker, most of these families used ASL! The kids and the families signed and they had the exact same complaints that the oral kids had.

Well, where the heck does that leave us, the parents?? So, I can work my butt off to learn ASL, provide an ASL home environment and school, but because I can't force her grandparents and cousins to learn sign, she is going to resent me? Fabulous.

IEP goals

So, I am finally getting around to blogging about Miss Kat's new IEP at her oral school.

Like I said in a previous post, this is the first time I feel like Miss Kat has had a comprehensive, appropriate IEP since....well, ever! They are addressing ALL areas of her education that are being impacted by her hearing loss (and her associated language delay) and even a few in which she is doing fine. It is such a comfort to not have to fight against low expectations any more!

So:

• Annual Goal #1- Expressive Language- To use a variety of six word sentences that include nouns, verb, adjectives, pronouns, prepositions and questions. (The goal is then broken down into 5 benchmarks that include the particular noun modifiers, pronouns, prepositions, verbs and questions using the TAG language assessments tools.)
• Annual Goal #2- Pragmatics- To improve Miss Kat's pragmatic language in social situations and in conversation to 80% accuracy. (The goal also includes 8 benchmarks, including one about learning the names of the other students and using them to engage the kids and initiate play with them, and she is CLEARLY doing that!! She is so much more aware of names, including characters in movies, restaurants and even me and Daddy! This is another example of something that we knew was a problem at the other school, but nothing was changing...sometimes I feel like this school is actually using magic!)
• Annual Goal #3- Written Language- To improve Miss Kat's written language to 80% accuracy. (The goal includes 5 benchmarks to help Miss Kat learn to use written language independently. Written language was never a consideration in any of Miss Kat's previous IEPs, which is ridiculous since written language is the expressive component of literacy.)
• Annual Goal #4- Speech-Voice Quality- Miss Kat will improve her overall voice quality. (The benchmarks include using appropriate durational patterns in connected speech, syllable stress, pitch variation and overall voice quality in sentences.)
• Annual Goal #5- Speech-Articulation- Miss Kat will improve her articulation skills with 80% accuracy. (Miss Kat's artic goals include final sounds, multi-syllabic words and correcting her own speech through listening.)
• Annual Goal #6- Auditory- To improve Miss Kat's auditory perception of speech with 80% accuracy. (Her benchmarks include open and closed set discrimination and improving her auditory memory but also safety environmental sounds such as a fire alarm...we would have never thought ourselves, but isn't that important!)
• Annual Goal #7- Phonics- To improve Miss Kat's phonics skills to 80% accuracy. (This goal is about sounding out words, the next goal is a little different, but related.)
• Annual Goal #8- Phonemic Awareness- To improve Miss Kat's phonemic awareness skills to 70% accuracy. (Ok, so the difference between phonics and phonemic awareness has always been a sticky subject so here is a good explanation: Phonics is the method of teaching beginning readers to connect the sounds of spoken language with letters or a group of letters and yes, part of phonics instruction involves the teaching of children to blend the sounds of letters together to form words (technically referred to as decoding skills). Phonics instruction typically starts with letters first and children are taught the sounds that those letters "stand for" or "make".  It is NOT the same thing as phonological awareness. The terms are not interchangeable. Phonological Awareness is the awareness of sounds only! It is void of print. No letters are introduced, no sound to symbol correspondence is taught.Phonics involves the eyes AND ears. Phonological awareness involves just the ears. You can have phonological awareness without phonics but you cannot have phonics without phonological awareness.Phonological awareness skills are prerequisite skills for phonics! So, Miss Kat will be working with rhyming, and other phonemic awareness goals.)
• Annual Goal # 9- Vocabulary- Miss Kat will identify sight vocabulary words in stories read, high frequency vocabulary words in stories read, and (her individual) vocabulary words in stories.
• Annual Goal #10- Reading Comprehension- To improve Miss Kat's reading comprehension to 80% accuracy. (Her benchmarks include identifying characters in a story, retelling a story, answer oral questions using cause and effect, making inferences, and drawing conclusions. This is all in stories that she is reading herself, whereas the goal above was in stories being read TO her.)
• Annual Goal #11- Math- To improve Miss Kat's grade appropriate math skills. (This goal also includes a benchmark about the vocabulary and language of math, which is something she has struggled with. She does fine with the numbers, but she didn't understand any of the language involved such as "add", "subtract", "minus", "equal", "greater than", etc.
• Annual Goal #12- Science and Social Studies- To expand Miss Kat's knowledge of science and social studies at grade appropriate levels. (This is also about expanding her vocabulary and language within these academic areas using typical curriculum.)

Not too shabby, right?!

I am so impressed with the school, the professionals and how much progress Miss Kat has made in just the couple months we have been here. It is really amazing. I finally feel the weight of "not knowing" being lifted. I DO know now. I know that she is making progress, I can see that her language is growing like crazy, and I know that she is learning to read. I know that she is going to be amazingly successful!

Re: Miss Kat's Brain

As we were collecting everything to head out the door to go to school this morning, I turned and saw Miss Kat staring off into space. She had a little, sort of, frown on her face. I called to her, she didn't turn, so I asked "Are you ok, honey?" and at the same time Hubby asked "What's wrong?". Miss Kat finally looked up and said "What?" So, again, Hubby asked "Everything ok? You looked sad." And Miss Kat answered, "No, I was watching a movie in my brain."

Just thought I would share.

Raising and Educating a Deaf Child

This is really great site. They answer questions submitted by individuals based on research and facts, rather than biases. They have many great professionals whose expertise is in different areas of Deaf education, so no matter what your situation is, you can get specific advice.

Check out this link:

http://www.rit.edu/ntid/educatingdeafchildren/?cat=12

Who does this first story sound like? And did you read the response??? Woooo Hoooo

Parents...What was the best decision you made?

I was talking with Hubby today about all the decisions we have had to make for Miss Kat, and there have been A LOT! Communication methods, IFSP goals, school placements, speech therapists, IEP goals, language choices, school choices, and on and on. But out of all of those decisions, two have stood out as the most important choices we have made for her.

1. Making ASL her primary language.

2. Giving her a cochlear implant.

The first wasn't a difficult choice, we just sort of fell into it. We started as a TC family, but it slowly evolved to ASL. She understood ASL better than English word order, and she always signed ASL herself. We eventually went voice off because the voicing wasn't adding anything and her spoken language wasn't developing so we just, sort of, stopped emphasising it in daily life. Once she was an ASL user, the rest of the choices sorted themselves out. Her school placement was a given. Her goals were easy. We even had no choice in what speech therapist we saw because there was only one who signed!

We made that choice and it was an amazing choice. She thrived and had great language skills. She did wonderfully! It was the right choice and it has served her well!

Second, we chose to give her a cochlear implant. This was a more difficult choice. It took a little more time and research and deliberation. When we did decide to implant her, we thought it was simply going to end her hearing loss progression and restore the (very little) benefit she received from her hearing aids in the past. Boy were we off the mark!!

When we made the decision to implant her, we had no idea that it would have the profound effect on her life that it did. We just thought we were upgrading her hearing device, not changing our life course!

Since implantation Miss Kat has developed open set spoken language understanding. That means that she understands the running speech of strangers and does not have to rely on lipreading or guessing. She is able to discriminate ALL the sounds of spoken English and can hold conversations from other rooms, downstairs or the backseat of the car. She is hearing very well.

We have made many decisions based on the success of the decision to implant. Our choice to move her from the bi-bi school, the choice to emphasis spoken language, even the choice to move here. Unlike the choices that followed ASL, each of these decisions have been equally tough. Our path continues to be full of worry and unknowns, but the joy on this journey is equal to that which we experienced on our former path.

So, parents of deaf kids out there....What was the BEST decision you made for your little one??

Little Updates

I haven't blogged in awhile, nothing much has been happening. Miss Kat was on Spring Break this week, but is heading back to school tomorrow.

Here are a few things that have happened in the last few weeks:

• Miss Kat was on the way to school awhile ago, when she said "When I grow up, I'll have a deaf baby. My baby will go to (her oral school)." That made us feel really good. She is clearly happy, and likes school enough to want her future babies to go there.
• We have been attending a "support group" for parents of deaf children at a Deaf community center. It is a sort of ASL class plus some games with the kiddos. Miss Kat seems to like it. She is able to play with some ASL using kids, so she can continue to keep her skills up.
• In regards to going to that group one day, Miss Kat said "I am deaf. Some deaf people talk. They have hearing aids and implants. Some deaf people sign. They don't. I can talk and sign. They are different but the same too. They are deaf." Yep, exactly right....they are.
• Some people have approached me about starting a Hands & Voices chapter in our state. I accepted and I am starting to try to get the word out!
• Miss Kat came home from school and was singing "5 Little Ducks". It was adorable! It was the first time she has learned a song. The words weren't all right, but she understood it. She knew it had a tune, and that it repeated. Maybe I will tape it and put it up.
• Miss Kat and I went to a Deaf expo yesterday. I got some contacts for H&V and she got some candy. Good time all around!

Everything is great out here. We had a great IEP, and as soon as I get a copy, I'll make sure to post the goals. I am having issues with audiology, but that will be another post!

Oral school workshop

So, on Saturday we attended a conference at Miss Kat's oral school. It was a great opportunity to meet other parents as well as get some good information from the professionals, and find out what resources are available in this area.

There were classes on:

• Social Skills
• Self Advocacy
• Special Education Law
• Mainstreaming
• Reading with your child

as well as several panels talking about local resources including a Deaf teen club and "support groups" (it is actually just getting together and having activities) for families of children with CIs.

It was a lot of good information. One thing I noticed at the end of the day....no one ever said a word about WHICH language these things should be in. There was ZERO dogma. It was simply about information for families. None of the speakers mentioned spoken language vs. ASL. One of the panel members used an interpreter (which the school provided) but spoke for herself.

It was so nice to NOT have people putting down other people's choices!

***I also wanted to address a comment made, this workshop was at the oral school, but it was not only for families that attend our school. There were families from other schools, including families who sign. In fact, there were children that were voice-off, kids that SIM COM and others that were oral only. This was a diverse group and no one ever said that THEIR way was the right way.***

USDB appears to be safe...for now

I don't know what to think of this situation. I have received some very conflicting reports about what is happening out there.

The oral advocates tell me that this whole situation happened because the Deaf community has been continuously fighting against the superintendent, claiming he is biased and saying that USDB is broken, so the Board finally agreed! They said that if USDB is so bad, let's just close it down and be done! You can finally have what you want!

BUT

My Deaf community friends say that this entire thing was a stunt orchestrated by the superintendent to further his oral agenda and put the fear into the Deaf community. They say that it is another example of his partisan politics and disrespect for the bi-bi school. The say that it shows his irresponsibility and that he should be removed immediately.

I am sooooooooo sick of this garbage. I am sick of everyone taking sides. Why is it always "MY way is right and your's is wrong"? Why do we have to try to build up one method by tearing the other down? Why can't we just respect each other's choices whether or not they are the same as ours? Successful kids come from EVERYWHERE.

Another Deaf school closing???

I received an email today from Miss Kat's former principal (from the bi-bi school). She said she had received notice that the Utah State Board of Education had voted to close down Utah Schools for the Deaf and Blind, and have ALL the children be served by their local school districts.

Wow....I am just dumbfounded. That is incredibly inappropriate. The only thing that closing USDB would do is guarantee a huge portion of the deaf and blind student in Utah will miss out on their educations. The bi-bi school allows for free communication between an ASL using student and their teachers and peers. What will happen to these students? There are so many student that (I personally know!) that would be completely unable to function in the mainstream with an interpreter! Either they are still language learners (and we all know you can't learn language from an interpreter!) or come from homes with many challenges, or maybe they just don't have an outgoing personality and would feel isolated in the mainstream.

And that is just the signing kids! What about the oral kids too? How would you provide an appropriate eduction for a child who is in 6th grade but their language is not age appropriate? How do you help them fill their language gaps but still make sure they have access to the curriculum WITHOUT a small, self contained option with a teacher of the deaf?

This is truly an outrage. MAINSTREAMING ISN'T ALWAYS THE ANSWER!!! And inclusion is WAY more than just geography! Just because you place a deaf child with typical peers does not give them access to the curriculum or access to direct communication with ANYONE!

I really hope this isn't the case. I hope that the legislature sees that this would be a profound mistake. Our deaf kids deserve options. Just because a local school district placement may work for some oral kids, it certainly WON'T work for all. And while their are some kids who do wonderfully with interpreters in a hearing setting, it is NOT the place for all of them...

(Oh, and that is just the beginning....what about the preschoolers.....how will they ever learn language without immersion in a language rich environment???)

"I spy with my little eye.."

Miss Kat has been making stupendous progress in the last few weeks (snow days not withstanding...) Her language is expanding every single day. The school is doing their job, believe me! Also, the weight of having to be all things at all times, has lifted. I know that she is getting great language, by great professionals, as well as overall a great education. It is a load off for all of us. Back in Utah, Miss Kat would spend all day at school, go straight to therapy, after that we would have to do at least an hour of homework, and then have to do supplemental work to "fill the gaps" that the school had simply moved past.  It was really a nightmare. She was working all the time, she didn't have a chance to relax and just be a kid. It lead to a stressed out kid with a stressed out mom, and that lead to a lot of fighting. It is completely different here. The school acknowledges that the kids are working hard all day at school and they want home to be peaceful and happy. They do have homework but it is always something that will not be frustrating and that the child can complete independently. They also are working on "filling the holes" all the time. They have done a great job identify things that Miss Kat missed out on (either because we, as new signers, didn't have the vocabulary to explain it, or because she joined spoken language so late that it was assumed that she already knew it) and they are helping us make sure she gains all that knowledge. And you know what, it certainly is working!

Now, for a cute story! We were playing "I spy" in the car the other night. I said "I spy with my little eye something that is yellow". Miss Kat immediately responded with "Daddy's teeth!" We laughed and said no, so her next guess, "Inside my ears!"....nope, but way too cute!

Interpreter?

Alright, so we are all settled in and everything is going great! Miss Kat loves her school, and she is doing very well. They group kids by their language and academic levels, rather than strictly by grade. It is a wonderful system and Miss Kat is already showing great progress. It is also very very clear that this school has much higher standards and expectations for the children both in language and in academics...we couldn't be happier!

It has been a huge burden lifted from us, knowing that Miss Kat's education is finally in the hands of excellent professionals. In fact, I don't even know what to do with myself! I can't believe that I don't have to fight anymore! I know that she is getting appropriate services, by qualified people, who actually understand and can work with a deaf child with cochlear implants. I don't have to worry whether or not her CI is on the right program (yeah, that was an actual issue with that at the old oral school. Can you believe that? What kind of  oral program can't work a hearing device?) I know that she is working for two hours a day just on literacy, that she is getting speech and language therapy...it's amazing. You know what the school wants me to do? BE A MOM, not a therapist! It's great!

Anyway, back to the point of my post.....we are having some trouble, but this time it is at church, not at school. As I have mentioned, we have attended a Deaf church since Miss Kat was around 2. Well, here, it isn't quite the same (good bye Utah, hello mission field!) We actually ARE still in the ward that serves the Deaf community (and that is just by "accident"...or someone elses plan!) but currently there are no Deaf people other than Miss Kat. So, we walked into the meeting and they had the "interpreter" ready for us. She did her thing, and Miss Kat followed along...for about 20 minutes, and then she started to color and do other things. (Uh, she is 7!) So, the "interpreter" decided to go and sit down....yep, no more interpreting. Then, when it was time for Miss Kat to go to class, she told me she was busy and that I should go with Miss Kat....

So, today I received a call from this "interpreter" again. She said she was sorry that we hadn't had the chance to formally talk on Sunday, and if there was anything that she could do for us. I said yes. I told her that I thought that Miss Kat could use the services of an interpreter during the children's classes. I said that they have lessons and sing songs and that I felt like she needed support during that time. She said, "yeah, I'm not going to do that.." In fact, she AGAIN asked me to go in, when I said that I didn't feel comfortable interpreting that meeting (church ASL and music are very different from the everyday conversational ASL that I use) she suggested that I just go with Miss Kat and have her "lipread" me.....SIGH! Until now I had always felt like church had been a place that was super supportive and understanding of Miss Kat's deafness and accommodated her and been a "Deaf place". If this IS the Deaf church, what on earth would it be like if we had gone to the hearing one???