My dearest Kat

I am so grateful that you have the listening and language skills to be able to follow my far left political rants. I am so proud that you went to school and told your best friend that it was NOT Obama's fault the government was shut down and that you voted for Obama at school because "Romney only loves riches, but Obama helps poor people". But maybe, just perhaps, at dinner with the Sister missionaries is not the time to wax political and rant about how when you were just a baby that Daddy was sent away to war "to fight for gas"!

Miss Kat's CI turns 5

Happy birthday to my ear!

Kat's advice

I was on a parent's panel a few days again, and one of the other parents said that their daughter (age 12) is very embarrassed by her CI. She thinks that everyone is staring at it. So, I decided to ask Miss Kat what she would say to such a girl. Here was her response:

"I would say that they are just curious. You are deaf and that makes you special. Everyone is different, and that is ok."

It was beautiful. She was empathetic, but also completely matter of fact. It was so amazing to here her articulate how she felt and how she would encourage someone who was having trouble. She is growing up so fast!

Music Mornings

Every morning on the way to school, Miss Kat and i have been listening to music in the car.  She prefers classical because she says it helps her relax and have a good day. Today, we had arrived at her school and were listening while we waited for the doors to open to let the kids in. I asked her what instrument was the melody and she immediately recognized the violin and said "Violins are for sad songs".  Some people claim that kids with cochlear implants cannot hear and make sense of music, but that has not been our experience at all. Here is an extremely late implanted child who loves music, enjoys listening to variety of types of music, and can even accurately identify the emotional motifs of passages and particular instruments.  Not too shabby.

Judging others

This is an excerpt from a reply I made on Facebook, after a long thread about the controversy of cochlear implants and spoken language. It reflects my thoughts and experiences about judging parents who do not choose ASL for their children.

NAME OF PARENT, I don't see one single parent telling people to do oral only. In fact, if you knew NAME OF ANOTHER PARENT, you would understand that her child has been in an ASL immersive environment since she was discovered to be deaf. Her daughter's first language was/is ASL, and she was in a bi-bi school for many years. YOU judge because she is also successfully oral, and because she believes that there is no right way to be deaf. The only person saying another parent is wrong is YOU and some of the militant Deaf people who are NOT parents of deaf children. 

It is clear to me why you are so angry and upset about oralism. It didn't work for your child, and since it didn't, you believe it will not work for others. I completely understand because I was there once too. I had a child who NEEDED ASL. She would have been completely without language without it. Spoken language was completely impossible for her, and she had no way to access it fully. I saw her, and so many other children like her and I (wrongly) generalized her situation to all deaf kids. Well, the truth is, that she is just that, ONLY HERSELF!! There are plenty of other kids who are doing amazing who have been raised with only spoken language. I have seen and talked with them myself. I have met them as adults as well. I have been to conferences and spoken to them, seen panels with them, emailed and talked on the phone with them. And they support me and tell me to keep fighting for my daughter!!

The truth is, when she was younger, I was completely immersed in the Deaf community and never had the chance to met adult like I just described. Why? Because they do not exist in the Deaf community. If you seek out the Deaf community, you are wish to use ASL and will be communicating using ASL. You are seeking out people with a similar story and struggles. You have the same beliefs and common background BECAUSE THAT IS WHAT MAKES IT A COMMUNITY!!! If you were deaf and an advocate for spoken language for deaf children, had no desire to learn ASL and considered yourself part of the hearing community, you wouldn't seek out the Deaf community, so why would you ever hear that there??

Last but not least, I also want to share that when my daughter was very young, I judged others brutally. I KNEW what was right. I KNEW that all deaf children needed ASL. I KNEW that they would grow up and fall behind. I KNEW that they would struggle to read at the 4th grade, and as they entered high school their education would be miserably far behind. And I KNEW that once they were finally away from their horrible, oppressive oralist families, they would all seek out the Deaf community and finally learn ASL, improve their reading and academic levels, and finally get better....and I KNEW that because that is exactly what I was fed. 

I was a close minded fool. I was reacting so angrily because I was jealous. I remembering going to a Hands & Voices retreat when Kat was almost 5, and the mother I was staying with called home and was able to talk to her implanted son on the phone. I remember crying because I knew that Kat would never have the ability to easily pick up the phone and call someone. Sure, she could use relay and a videophone, but that is not the same. I just saw for a moment how the world really wasn't set up for her, and it made me so sad. I was jealous that her child didn't need special accommodations, that he wouldn't have the same stumbling blocks and communication issues that Kat would her entire life. I was sad that she couldn't just walk into a store and ask where the shoes were, I was sad that she couldn't watch any movie at any time. I was so jealous that their children were going to have easier lives than mine, and I lashed out with judgement and anger because of it.

Auditory cortex development to a 10 year old

Miss Kat has gotten a little lazy about her listening lately. She has been taking a bath without her Neptune, putting off putting on her processors in the morning, and watching movies with the volume turned down pretty low, stating "I can just read the subtitles"...and this is unacceptable in our house. So, today I decided to explain to her why. This was the process of me explaining auditory cortex brain development to my deaf 10 year old. I said:

"When you wear your CIs, you are building up your brain like a muscle. We want your brain to be very strong, so that you can hear and understand when people talk. When you aren't wearing your processors, or when you don't listen, you are going backwards. You are getting further away from the goal. That is why I get upset when you watch a movie without sound, or go so long without your processors. We want your brain to be as strong as it can be."

She understood and we discussed it. She said that she forgets sometimes, and I said that was fine, and that I would make sure to remind her. She asked how, and then said "Oh yeah, sign language!" Silly girl...

Cancer? Really??

I just had a Deaf adult on a group for parents (who I had blocked because she has a HUGE problem with me) say that she hopes I get cancer someday so that I can "see what Deaf people feel". She says she will never be silenced because of my cruelty to Deaf children....

This is supposed to be a community that I want my child in? Every day I am fighting with my professors, saying that I believe ASL is beneficial to deaf kids, that deaf kids with CIs have speech, language and audition equal to deaf kids of hearing parents, that CIs aren't always the right choice for all deaf kids, and that kids who start with ASL can have outcomes equally good as those who are oral only, and what do I get in return? Cancer wished upon me...

Jacob's Ride

This past week-end we had a very interesting event happen in town. If you happen to follow "cochlear implant events" you will know about a young man named Jacob who is riding his bike around the country to raise money and awareness for cochlear implants. (If you do not know about Jacob check out his website here )

Well, Jacob came to our city over the week-end and came to visit Miss Kat's school. They had a little pep rally and got to hear his story. (He also went to the baseball game, but Miss Kat finds them "boring" so we skipped that part!) They also had a parade where the kids got to ride their bikes with Jacob and give him a send off. She had a great time!

A Book Review

When I was sitting in my adviser's office, registering for classes last week, I noticed she had a pile of the book "If a Tree falls". I asked her if the book was any good, and she said yes, and that she was assigning it as reading in one of her graduate classes. She asked if I would like to borrow a copy, and I said sure. I took it and had finished it in less than 24 hours.

I remember when this book was first published. It was 2010, and in the advertising it said that the parents had made a "controversial decision" about how to go forward with language and learning when they discovered that their to daughter were deaf, and deaf from a genetic condition that was throughout their family history. When I heard that, I was like, "Wow, they must decide to forgo the implant and use ASL." Well, nope. Don't mean to spoil it for anyone, but they end with with a CI, and listening and spoken language. I guess they would have been making the decision in 2004, so maybe it seemed more controversial then (but I doubt it). Plus, their older daughter was already attending Clarke Northampton, so it is not like they were alone on this journey, unable to find support or understanding for their choices...

Don't get me wrong, I fully understand how difficult a decision it is to implant your child. I mean, we did it just a few years ago! And I know how heart-wrenching decisions about language and schooling can be. Our family still struggles, and will until Miss Kat is old enough to decide for herself. But, to call choosing spoken language and cochlear implants "controversial" today? In the hearing world? I don't really think so.

Other than that, I thought the book was nice. It was an interesting story, very heart-felt and truthful. I could feel the emotions the mother was going through, and I ached for her. I would recommend it for anyone. It is a nice easy read, and a good introduction for people who have never been a parent of a deaf child, or if you are one, it is always lovely to hear the story of another!

House rules? Oh, never mind...

Miss Kat's Nana came to take her back to Utah for the last weeks of summer, and her oldest cousin came along to get a taste of our city. We love showing the out of town guest all the awesome things there are to do here. Well, her cousin said something and Miss Kat missed the remark. Miss Kat asked for clarification, and her cousin brushed her off. That's when Miss Kat stopped everything and did something I'm EXTREMELY proud of!

She said:
"No, in our house we don't say 'never mind', you have to tell me. It is the rule".

Great job Miss Kat!! She advocated for herself, and wasn't allowing herself to be left out of the conversation. And she is right, we don't allow never mind in our house. We don't allow either side of a communication to give up or to leave the other person out. I was so excited that Miss Kat has completely internalized the fact that she has the right to be included in every conversation and that she deserves access! Keep fighting Miss Kat!!

Relaxation...

So, it is the last week of summer school, and in a few short days Miss Kat will be headed back to Utah to visit with family. We are having a simple Sunday at home, allowing all of us to just hang out. Well, Miss Kat was attempting to finagle an extra bit of candy out of Dad and I. (She is allowed one treat a day, and she knows it.) So, she says "Can I have a Fun Dip?" So, we start tut-tutting about the one treat rule, and Miss Kat comes back with "It would be soooo relaxing. Remember last time I had a Fun Dip, it really helped me relax".

Seriously? What kind of argument is that?? An adorable one...and now she is off enjoying her candy treat...

The Principal's Award

This year at graduation/honor's day, Miss Kat was awarded a great distinction. She was given "The Principal's Award". She earned this accolade by making greater than 1 year's progress in 1 year's time, in ALL AREAS of her standardized testing!!!! She also received the "President's Award for Educational Achievement" and "High Academic Achievement Award" for "superior achievement in reading comprehension, total math, language and listening,"

In addition to that, we just got her reading assessment (Woodstock Johnson III) back, and she has made tremendous progress. She scored withing the normal range in three areas, and huge gains in all of the areas. In fact, she went from a score of 71 to 87 in "Passage Comprehension"! She gained an average of 5 points (a score remaining the same from year to year indicates a full year's growth) but as high as 14 points (in Reading Comprehension)!

Way to go Miss Kat!!!

Advanced Bionics Naida CI Q70

AB is rolling out their new device, and here is the user guide. It is extremely in depth and has about 60 pages!

http://www.advancedbionics.com/content/dam/ab/Global/en_ce/documents/recipient/AB_Naida_CI_Q70_User_Guide.pdf

A name change

Miss Kat told us today at dinner that she wanted to change her name. She wanted something "fancy". We inquired if she had a name in mind, and she did. She says that we must now call her (drum roll please!) MARSHA!!!

She said that it is fine for the teachers at school to continue to use her given name, but that we should send a note explaining that the students would be calling her by her new, and improved name. (We would hate for those poor teachers to be confused by the goings on!)

She also found this at dinner!

What an excellent fortune cookie! Amazing!!!

A New Holiday

Miss Kat has decided that she is looking forward to "Children's Day" in July. When pressed about it, she declared that "children's day" is like Father's Day and Mother's Day. She should get breakfast in bed and "lots of presents".

(It is in July because Mother's Day is May, Father's Day is June, so Children's Day must be in July.)

3 Mythbuster pigs

Miss Kat had science fair last week, and here she is explaining her experiment. 

Fundraising!

Transcript: Hello! My name is Katrina. I am deaf. I go to Central Institute for the Deaf. My school costs a lot, but doesn't turn away anyone. Can you help CID? You get yummy pizza or pie or cookies!

Voicemail

Miss Kat has been working on telephone skills with her speech therapist lately. She was working on memorizing our phone numbers, (memorization is extremely difficult for her) and Daddy discovered this on his voicemail:

Transcription:
Miss Kat: Don't call me back. I'm just practicing your phone number. Bye Dad.

She couldn't possibly be sweeter !

Miss Kat on the news!!

Just after Christmas Miss Kat sent her Nana a letter on her new Hello Kitty stationary that she had gotten from Santa. Unfortunately, the letter was so small that it seemed undeliverable...oh, and she forgot the stamp!   Someone with a big heart at the post office decided that this little letter deserved to make it to its destination, and yesterday, unbeknownst to us, Nana received the letter. Nana was so moved by the generosity and caring of the post office that she called her local news station to share the happy story.

Utah news story

Well, a station here in St. Louis heard about the story and asked to interview Miss Kat about it! They came to her school and asked her some questions. She did an amazing job!!

St. Louis news story

The interviewer spoke with Miss Kat for an hour and a half in total. She understood everything he asked her, and he was clearly able to understand her as well. She pulled out some amazing vocabulary (rockstar and impressed, and a few other doozies!) Miss Kat was so poised and amazing that her teachers actually cried from pride!

WAY TO GO BABY GIRL!!!

Christmas Program

Every year since Miss Kat has entered school, her Christmas program has been a barometer for how i feel about her school and the education she is receiving. When she was attending her bi-bi school, I wept with joy to see her surrounded by children like herself and to see her language developing. When we switched to the oral program, I cried again, but this time it was with misery when I saw her surrounded by typically hearing children with language that was miles beyond hers and we watched as she struggled to follow what was happening. She pretended to know the words to songs far beyond her comprehension level, and she just smiled and nodded, completely lost.

Again, since we have moved, the Christmas program has reminded me about the differences in the schools we have chosen for Miss Kat. This year, again, I cried. I saw how much this school has transformed her life and what a great opportunity it has been for her.

Here is a video of the upper primary students doing a dance routine they learned in gym class. Miss Kat is in the second row in the red dress and black leggings.