Another Mom's question...

I received this comment from another mom and wanted to share it and ask for feedback as well:

Dear Miss Kat's Mom,

We are in a similar situation, but the opposite. My 7 year old daughter is an ASL user. We have no local services for deaf children, because our area is rural. My daughter is mainstreamed with an interpreter and has never even met another child with hearing aids. My daughter's language is delayed, I think because she can only learn from the interpreter, and she struggles socially as well. We are considering moving to so she can attend California School for the Deaf, but we would be leaving family and home as well. Do we trade what we have to give her more?

Thoughts?

"Should I stay or should I go"

I had a nice long talk with one of Miss Kat's teachers for the summer. She told me what they would be working on for the 5 weeks and overall how they handle things like language and reading during the year. She threw out the bomb....

"Would you ever consider moving to another place for services for Miss Kat?"

Argh.

I don't know....maybe.

I have always promised myself that we would do whatever it took to get Miss Kat the education she needs. We even discussed, when she was solely an ASL user, moving to Fremont when she was older, but this is huge.

There are some great pros. She would get an education from people who truly understand her needs, from top professionals. She would have access to a really wonderful school that does what it does with excellence.

BUT

There are HUGE cons. Our entire family lives in a one block radius. Both mine and Hubby's parents, her cousins, even her great-grandparents are 10 minutes away. We actually have a village, who has that today?? (Plus, jobs, finding a place to live, blah, blah blah...I can deal with that)

So, what is more worthwhile? Literacy and language or love and family?

What's your vote?

We are here (and working already!)

After a three day train ride from hell (broken down train, delays from flooding, a guy who snored loud enough to wake up a child with a profound hearing loss, a missed connection, a broken down bus, and no bathroom in our train car THE ENTIRE TRIP!) we are safe and in St. Louis. We are staying at a lovely "boarding house" for people who are in town for medical treatment called Haven House. We arrived at about 1 am Monday morning and had to leave for the first day of school at 7:30! That wasn't pleasent!

We arrived at CID at 9 am. The school is beautiful! It is in an old brick building, and inside they have tons of classrooms and cool toys and one room looks to be just for dramatic play! How wonderful it must be to go to school here!

So, Miss Kat starts her school day with a listening check in "home room". There are 5 kids in her class, including a deaf of deaf child. (She is only the third deaf child of deaf parents I have met who has a cochlear implant, but actually, when I think about it, I only know three ASL Deaf of Deaf families too, so that isn't really a huge amount). After a few minutes the groups split and Miss Kat is in a reading group for an hour. We are still trying to figure out exactly which reading group is the best fit for her, so that is being worked out. CID has a huge emphasis on reading, and that is one of the reasons I chose this school for Miss Kat this summer. After reading is small group language time. They play games and do activites related to the week's theme and work on expanding the student's language. Miss Kat will also be having private speech and language therapy everyday. BUT in the afternoons it is FIELD TRIP TIME!!! The kids will be going to tons of different fun places in the next month. Monday they went to the Arch museum and got ice cream from Coldstone. They will also be visting the Science Center, Children's Museum and a Rodeo. It's going to be so much fun!

On the way home from school, Monday, Miss Kat was playing a game with me. I think it was "Simon Says". She would tell me where to touch and I would have to listen and get it right. Well, during the game I learned that Miss Kat has learned at least two body part words at school, in one day! She learned "fingers" and "shoulder". Great job Miss Kat!!! (Oh, and fast work CID!!!) We also talked about her ribs, and she figures that they are "stripes"....not bad thinking....She was also concerned that she couldn't find her heartbeat. She said "It's (her heart) not working!" I told her that I promise it is working still, but I'll feel for it at home.

So, so far, all is well at CID. I'm excited about school and I think this is going to be great for her!

Off we go!!!

We are leaving for St. Louis tonight (well, actually tomorrow at 4am). I'm excited but also terrified! I think this is going to be a wonderful opprotunity for Miss Kat to work with some of the premier professionals in the field of deaf education.

$90,000 a year my ass.....

What I learned

Miss Kat and I had a good time at our conference. I learned a lot and Miss Kat LOVED camping. I met several new families, it was nice.

The first thing I noticed was that Miss Kat was the ONLY CI user that wasn't bilateral! Also, nearly all were implanted between 12 and 18 months, (I'm so jealous...) and only two of the kiddos (out of more than a dozen) that used hearing aids. I had no idea that CI's, and bilaterals were that common.

That next thing I noticed was that when we went swimming, every single family signed when devices were off! We obviously used the most ASL, but it was interesting none the less.

We had several very interesting parent classes. One was on literacy, which was very timely and useful for us!!! The Teacher of the Deaf explained that while a child can learn to decode, they can not actually learn to read before a few developmental milestones are met. The first is that they must have the language level of a five year old. That made perfect sense! Miss Kat is able to decode (sound out words) but she doesn't have the language to understand what the words mean. So, the best thing we can do for her reading right now is continue to grow her language. The other point was that a child (who uses spoken language to decode the written word) must have an auditory memory of at least thirteen seconds. They need to be able to read the information, process it, and understand and still remember it when they are done processing!!


So, how do we work on auditory memory? The first game is a lot like 3 card Monte! I put a piece of candy under a cup and mix them up, Miss Kat has remember where the candy is, if not, Mommy eats it! Turns out Miss Kat is very good at this game! She even bested Daddy a couple times! (I don't know how this translates to AUDITORY memory, but she is the expert not me ;)) The other game was putting toys or candy or something through a paper tube. You show the items, and then ask them the order that they will come out the other side. When they master that skill, you put them in and flip the tube! Then they have to remember them backwards! Kids need to be able to do it both ways for reading.

They also said that when you are reading aloud to kids, make sure that you read books with language that is just a little above the child's current language level. They said to aim for about a year higher. We discussed how to add "I wonder..." and "What do you think.." questions into the stories we read.


The next presentation was on cognition. I learned several things. We talked about Piaget's theory of cognitive development. We determined that most of the kids would be in the "preoperative" because of their ages. We went over a checklist of cognitive skills that the kids need to be developing. Miss Kat was able to do all the things on the checklist. We talked a lot about the "right way" to ask questions, and how to build the child's thinking skills. One of the ideas was having a child draw a picture that you describe, with lots of details and then have them describe another scene to you.

So, since Miss Kat seemed to be able to do all the skills listed in the "preoperational stage", I asked the teacher how you knew if your child had moved on to the "concrete operational stage". She told us about the "conservation of water" test. So....we went home and "tested" Miss Kat. She passed with flying colors! So, Miss Kat's cognitive skills are right on level (if not a little ahead of her age)!

We also met with our local AB rep and got some cool info. First, he said that ClearVoice is slated to be submitted to the FDA is September and then, hopefully, will be approved around 6 months after that. The second was this: I'm so excited! I'm totally obsessed with Miss Kat's mics and whether or not they are working (not a great reporter). Until now, I had no way of testing the t-mic at all. We should get one of these guys with Miss Kat's bilateral kit.

I also picked up an actual statement about when deaf kids are ready for mainstreaming. In the past all I ever heard was either "Right from the start! They need to pick up typical language from typical kids" (which NEVER felt right in our case. Miss Kat couldn't pick up anything right after activation! How could she interact with her peers without knowing any of their language?) or we heard "Oh, it depends on the kid...some are ready sooner than others..."....(Uh, could we get some benchmarks or something? Are we just guessing or will she wake up one morning with a stamp on her that says "Ready for mainstreaming" like a turkey indicator??) Well, the TOD said that she does not support mainstreaming until the child is within one to two years of the typical language levels of their peers. Ok, that makes sense, they need to be able to follow the language of the kids and the classroom, but they don't have to be all caught up to be able to benefit from the mainstream.

The last and coolest thing I found was Clix for Kids. Do you guys know about this? I was already aware of all the cool stuff that The Listening Room by Advanced Bionics but this, I didn't know about. Clix for Kids is a discrimination test, right on your computer. It starts easy, with supersegmentals ("Hi" vs "Uh oh, those boots are dirty" vs "That's too loud!") going all the way up to final consonant change (sheep vs sheet and cut vs cup). It will save your scores and show the progress that you are making. We did it with Miss Kat and she did great!!! She scored perfectly up through level 7, missed some on level 8 and level 10. So, now we know exactly what we need to work on! (Oh, and by the way, WOW, I remember pre-implant she struggled with even levels 1 and 2!)

So, that's what we learned on our camping trip to Sound Beginnings....oh, and Momma learned how to put up a tent, that starting and keeping a fire are tough, and that body heat is really the best way to stay warm at night!!

Our Crazy Summer!

Our summer plans begin this Wednesday! We will be headed up to Sound Beginnings for their summer camp. http://www.soundbeginnings.usu.edu/docs/SoundBeginnings4-20-2010.pdf It will be Wednesday, Thursday, and Friday. Miss Kat will be doing kids activities and I will have parent classes. We are camping out those nights (because we couldn't afford a hotel room!) and Miss Kat is so excited (I am less than thrilled, but I will survive)!

Then we will be home for another week, one that is packed with appointments and fun. Then on Friday we will be headed out to CID for our summer school! We will be staying at CID until July 23rd.

The following Monday is Miss Kat's pre-surgery ENT appointment and then Tuesday the 27th is her bilateral surgery!!

WOW! That is a lot to get done and it is all starting the day after tomorrow!

What a difference a year makes!

This first video was made in March 2009, about 4 months after Miss Kat's activation. The second was taped today, 18 months post. She is using the same book. In the first video I am signing the book to her off camera. In the second, she is reading it herself.

Two language samples

The first was done during the first few weeks of school.It was this year, when Miss Kat switched to the oral school. The second was in May, Miss Kat was doing her book report. In a language sample all utterences are written exactly as the child says them. You don't "fill in" what they meant. Both samples are oral only.

9-2009

Cat
He go door
He home
A store
All go see
All talk talk
See look
Look cat
Look cat
Mouse look mouse
Run dog
Play bird
All animals
Animals line eat (sim com)
Have bag
Have cat
Have dog
Have cup
Can? Cup
Bye bye mama
Again cat
Cat go home

5-2010

Hello puppy. Hello kitty.
What doing?
What cat's name?
Cat's name Sas.
Dog's name Sally.
Bunny black and white, pink ears.
Saw bed, saw a bunny.
That bunny nameBunnicula.
"Wow. Wow. That cool bunny"
He saw my daddy, boy, boy.
He's bad!
That's not good, that bad.
Bunny mean!
That red.
So bunny, he hungry.
Then so sad, so hungry.
He's so sad.
Then kitty look bunny tail.
Kitty think maybe bunny bite.
Then he eat.
Bunny bad!
Not food grass, no.
Then the food gone, can't eat.
Happy bunny.
Oh no, can't eat!
He big bunny!
Puppy, what?
Crazy kitty!
Maybe Bunnicula.
Kitty may be scary.
Bunny don't like.
Well, so sad.
He so sad.
He can't eat.
Kitty think sad.
Today, maybe bunny go away.
He's so cute!
Kitty don't like. Go away!
Puppy, "what?"
They talk.
Bunny look cat.
That's funny, the eyes.
Mom-mom cook.
Bunny like eat.
Bunny jump up.

That is way more than an 8 month gain!!!