Halloween (better late than never!)

This year's halloween was a world away from last year.

Last year, we were two days pre-surgery. We were worried about Miss Kat, worried about complications and recovery, just, really, worried about everything.

Last year Miss Kat was wearing hearing aids that weren't very effective anymore. She couldn't hear us call her from very far away, so we made sure to stick very close to her.

Last year was our first year trick or treating in this neighborhood, so when people would ask Miss Kat a question they were always surprised when we would interpret it back to her, and then would come the questions...."Is she deaf?", "How long have you been signing?", "Was it hard to learn sign?", and on and on...

This year was totally different!

Miss Kat was actually knocking on doors and saying "Trick or Treat!" Ok, so it sounded like "twitwee", but who cares! We definitely never thought she would learn that phrase. Before her CI, it was way too much work for her to learn words to spend that time on something as trivial as "Trick or Treat". Plus, it would have never been intelligible enough for anyone to understand, so we just signed it.

This year, Miss Kat told everyone that she was "Ariel" and that Daddy was "Daddy, prince mermaid" and I was "Octopus witch RRRAARRR".

Miss Kat is still, maybe, 30% intelligible (we understand 99.99%) but the fact that she is communicating through spoken language is amazing and sometimes even dumbfounding.

What a difference a year makes!

One year ago

One year ago, we had to wake up very early.

One year ago, my mom took the day off work to be with us.

One year ago, we sat in a waiting room.

One year ago, we put her hearing aid on, for the last time.

One year ago, we changed her into a hospital robe.

One year ago, we took her hearing aid out, for the last time.

One year ago, they wheeled her away, drowsy but happy.

One year ago, she woke up in pain and disoriented.

One year ago, she signed "I want Mommy", and I crawled into her hospital bed.

One year ago, she wore a bandage on her right ear.

One year ago, she received a cochlear implant.

One year ago, we began a brand new part of our journey.

Uh-oh....

I yelled at Miss Kat's teacher today...

We have been working very hard at home, on reading and on language in general. We have been doing Miss Kat's sight words every night, plus her homework, plus we read twenty minutes every night and we are working on phonics through Miss Kat reading a series of books called "Reading For All Learners". Miss Kat reads 3 of those every night as well (they are only 20-30 words long.) Plus, we have speech therapy two nights a week. So, Miss Kat is working her behind off every single day. And it shows!!! In the last 9 months, she has gained 2 full years worth of language!

But, since school has started, Miss Kat's teacher has been calling me, at least once a week, telling me all the things Miss Kat can't do. She sends extra work home. She tells me that Miss Kat doesn't know her letter sounds (she does for us at home!) She says that Miss Kat doesn't understand anything that she doesn't sign (well, duh, this is totally new to her!) She says that Miss Kat doesn't even put two words together (Come on! That isn't even close to true!) So, I feel like she is very negative about Miss Kat and her progress.

On top of all that, I have this HUGE weight on my shoulders all the time about Miss Kat learning to read. I think that learning to read is the single most important thing Miss Kat will ever learn. Deaf children have huge obstacles to overcome in literacy, and the outlook (statistically) is still very grim. Plus, if push comes to shove, it could be possible that reading and writing could be the only way Miss Kat can communicate with hearing people in everyday life.

So, I've been getting these negative reports, what feels like everyday, plus the burden of teaching Miss Kat to read is always weighing me down, and today, I snapped.

The teacher had called me, during dinner, to tell me all the things Miss Kat can't do, AGAIN. She told me that she was worried that Miss Kat wasn't able to give an answer when she asks the class "Can anyone tell me a word that starts with 'T'?" and that she can't "blend sounds" and I was just so sick of it. I told her that I felt like she didn't understand how hard Miss Kat is working. I told her that we work on everything, every single day. I told her that we spend hours, doing work, every night, and that I don't think she gets it. I told her that I felt like she was just waiting for Miss Kat to fail, so that she could send her back to the Bi-Bi school. I told her that I thought she didn't like Miss Kat, and that she wanted rid of her.

Miss Kat has been working so hard! She has gained so much and I felt like they were only looking at the negative. She (and we) is working all the time, and all we ever hear is what she can't do, what she doesn't understand, and how far behind she is. I was just sick of it.

Miss Kat's teacher was dumbfounded. She said she was very sorry that she had been so negative and that she was just trying to keep me informed. She told me that she thought I was the kind of parent who wanted to know exactly what was going on, and how to help Miss Kat reach her full potential. She said that she was really hurt that I believed she wanted Miss Kat to fail.

Ok, I did overreact, but this whole thing has been really hard. Learning to read is such a big deal! I think that I have been really stressed with all the changes, and the new school. I just lost it for a moment.

When we implanted Miss Kat, we had no idea that our path would change so drastically. We were an ASL family, active in the Deaf community, and happy at our wonderful bi-bi school. All we expected was to regain the hearing that Miss Kat lost with her last hearing drop. We NEVER expected her to take off with spoken language, and for her to really become passionate about listening and speaking.

It is really hard for me to see Miss Kat behind (and in her oral environment she is behind). I know that I really don't believe the things I said to her teacher, I was just overly emotional in that moment. Miss Kat isn't frustrated, she loves going to school, she loves her teacher and her new friends. She is learning so much. She is still in the right place.

P.S. So, I don't get nasty comments:

The "work" I am talking about is still fun, age appropriate stuff. We read books, play games, color, and do activites. But just because it is fun, and we are, for example, at the zoo, it is still exhausting to have to explain, and talk, talk, talk, about every single thing. It isn't drills, or anything like that, that we are doing. Just, after a year, we are getting tired.

Yikes! (and then some great news)

So, you are now well informed about our FM issues, but as soon as we got home from the audi, there was more trouble. We walked in the door, after a smooth two hour drive home, and turned on the lights, and headed downstairs to the family room. I flipped on the TV and sat down on the couch and Miss Kat started looking around. She told me "It's loud." I asked her what was loud. "It's loud! It's loud!!". I asked her if it was the tv, or me talking, and she started getting more and more upset. Finally, she stands at the foot of the steps and yells (to no one) "SHUT UP!!!".

At this point, I am horrified. I have no idea what is going on. I took her CI off, and then changed it back to the old program (no t-coil), and then she was fine. I immediately called our audi and asked him what was going on. He said he didn't know, but that he would call Advanced Bionics and find out what they had to say.....


Verdict??


Miss Kat's t-coil is picking up interference from our compact fluorescent bulbs! Damn you Leonardo Dicaprio an your handsome face on Oprah!! I'm trying to do the right thing here!

So, we are leaving her on one setting at home, and one at school. But now I'm worried that school will forget to change her program and she will end up without an FM again....Ugh.

Now, for the better news (drum roll please!!)

On her latest standardized testing, Miss Kat scored 3 years 7 months!

That is now a gain of over 2 years in around 10 months!!! She is doing amazing!

She is starting to really pick up "incidental learning" from the other kids and her teacher. We were playing BINGO the other day and after she won she said "Switch!" and switched our cards! She also now says "You're welcome" (which doesn't have a sign) and "Good job!" after you do something she asks. These are all words and phrases we didn't sign and nobody taught her!

YEA FOR MISS KAT!!!

More Happenings

Problem, after problem, after problem.

So, we headed up to the audiologist (again) to get Miss Kat's T-coil turned on. She needs the t-coil so she can use the neckloop FM system at school.

Well, actually, let me back up a little.

Miss Kat's classroom has a soundfield, but we didn't feel that was the appropriate accomadation for her. We thought that she needs a personal FM system. So, there is a boot that fits on her Advanced Bionics BTE and one that would attach to her hearing aid, for an FM system. Sounds simple doesn't it? Well, nothing ever is. The school said they would only give her the boot for the CI side. They said it is too expensive to do both and that her CI is clearly the dominate side. Expensive?? Really? That is the excuse? You are the School for the Deaf and you can't get ahold of an FM boot?

So, that leads to problem 2 with the arrangement. We can not check the FM on the CI side. We have no way to tell if she is hearing well or just getting static. Miss Kat is not a good reporter, so she could end up hearing way less with the FM than if we have left well enough alone.

So, that brings us back to the two hour drive to the audiologist. We came up with a different FM system. It is a neckloop and it will broadcast to BOTH ears, and solve both problems (we can listen to the FM through the hearing aid, and make sure it is working everyday). So, we head up and turn thet-coil on.

But now we have two NEW problems.

First, the CI lights are disabled. That means we have no idea if she is connected, or if the battery is low. I suppose we can deal with that. We still have another setting that still has the light active (or we could be responsible and just change the battery BEFORE it starts to die!). Ok, we can handle that.

Number two, her hearing aid is dead. It is 5 years old, prescribed for a moderate loss, and now BROKEN! It isn't even amplifing the way it should. The casing is shot, there is a big hole, and it isn't working right. We have been trying to get Medicaid to buy a new one for awhile are 4 months early. Seriously? You are going to deny us over 4 lousy months? Our audiologist is sending an appeal....

Audiology

Miss Kat had a trip to the audiologist today (4th day of school). While her classroom already has a soundfield, we believe Miss Kat needs a personal FM. The spend time in a classroom of hearing kids (so 25+ students total) and they do a lot of small group work, so I think she would really benefit. So, to demonstrate a need for a personal FM, we needed to do the "Hearing In Noise Test" or HINT. When I suggested the test to our audi, he was a little concerned. Miss Kat has only been hearing with her CI for 9 months and he summed up the concern with "The point of the HINT is to score well in quiet and not in noise. What if her score is low in quiet??"

It was a valid concern. Pre-CI Miss Kat was given the ESP test. It was a closed set of 12 words that were vastly different. She scored 1 out of 24. That means she couldn't tell "ice cream cone" from "toothbrush" from "airplane". Seriously. Those were the words on the test. This time she would have "gum" vs. "gun". It is a much harder test!

Sooo....Miss Kat scored 86% in quiet!!! Her audi was dumbfounded! No one could have imagined that Miss Kat would be doing this well, and so quickly! Every single day she improves. Her private SLT thinks her progress is amazing too. She can't stop talking about the difference the CI has made for Miss Kat. (By the way she scored a 68% in noise, so we have proof that an FM would make a difference) Her SLT cautioned me that I shouldn't think that every ASL using, late id'ed, late implanted Deaf child would turn out like Miss Kat, so don't go around recommending it to other parents! I know Miss Kat is an exception (perhaps because she is so exceptional!!) but we are just enjoying the ride. I can't wait to see how high she'll fly!!

First Day of (Oral!) School

Today was Miss Kat’s first day at the oral deaf class. I had to work, so I sent Daddy to take notes and report back to me. I also went there straight after work and checked up on Miss Kat. I hung around for about an hour and then came back to pick her up.

There are nine students in the class, including Miss Kat, seven girls and two boys. Miss Kat’s spoken language is by far the lowest of all the students, but academically, she is absolutely on grade level. She is the only one who is severely delayed, except one little girl, “M”. M uses cued speech. She has a transliterator. She is very dependant on the cuing. I don’t understand why M can have a transliterator, but Miss Kat can’t have an interpreter…

When Daddy walked Miss Kat into the classroom, the teacher had all the kids go and find their desks. Miss Kat got very worried. Up until that moment, she had been very excited and proud to be going to school. She was worried that she wasn’t going to have a desk (poor baby) Of course she did have a desk, and she was very happy when she found it! I had tried to prepare her and worked really hard to try to answer all her questions and assuage any fears she might have. We had played on the playground, looked around the school, found the bathrooms, and talked about the schedule and where the library, gym and lunchroom were. I NEVER thought that she would think there was no desk for her; I guess there is no such thing as totally prepared!

First thing in the morning, they discussed the day, and what was happening. She was paying attention, and when she understood, she would turn to Daddy and sign it to him. After a few minutes, she turned and told Daddy that she needed to potty. He told her to tell the teacher, she raised her hand, and voiced “Potty”, and the teacher understood and took them all to the bathroom.

Through the day, if Miss Kat didn’t understand, the teacher would repeat and then sign or gesture and Miss Kat would understand. The teacher knows some sign, but nothing like at the bi-bi school! She says she is trying, but she worries that Miss Kat doesn’t get the information if she doesn’t sign. I told her that we are also worried, but that it is still very early, and we are hoping that it will click soon, and she will start catching up. She says she isn’t too concerned yet, but that we all want to be on the same page.

Miss Kat is very very happy. She is excited to go to school. She tells me how much she likes “talking school”, how much she loves her new teacher, and that she has lots of friends. She is terribly proud that she can hear and speak. She always tells us “I can hear you” with a big grin on her face.