People I don't know, whom I am grateful for

There are a lot of people in my life that I am thankful for. They are family and friends and professionals who make a difference in Miss Kat's life. (Miss Aimee, she still talks about you every day, do you want to come to her birthday party again?) They know who they are, and I try to go out of my way to thank them every time I see them. Today's post is a little different. I want to thank the people who have changed Miss Kat's life, but we have never met.

First, I would like to thank Abbe Michel De L'Eppe. He set up the first "manual" school for the Deaf and showed the world that the Deaf could communicate, be educated and learn to read.

Second on my list would be Jean Massieu. He was the first Deaf teacher of the Deaf. He started a tradition that continues to provide some of the best teacher in Deaf education today. He is also the name sake of my daughter's first school.

The next two people on my list go hand in hand. They are Laurent Clerc and Thomas Gallaudet. When Miss Kat was newly diagnosed with her hearing loss I read a children's book about Clerc and Gallaudet. I cried with joy as I read it. I am so thankful for these wise and inspired men. I can not imagine what my beautiful child's life would be like today if they had set up a school for the Deaf and taught children sign language. My child can have language, communicate with other children, go to school, and learn, all because of these two men. Thank you, from the bottom of my heart.

The next person (group of people, really) is Dr. William House et al. who helped create the cochlear implant. They have profoundly changed my daughter's life, and yes, it is for the better. She has a better relationship with her extended family because of her implant. She is less frustrated playing with hearing children, and she is able to understand and speak to anyone she meets. That is also amazing, and I am thankful for that opportunity.

The last person on my list I have actually met, in passing. It is Rachel Coleman, the creator of "Signing Time". I know it sounds silly, especially compared to the other people on this list, but honestly, she changed our lives. It was through "Signing Time" that Hubby and I learned our first signs. Miss Kat saw other Deaf kids for the first time on those videos, and she and I would sit and practice our signs watching the videos. They have also brought ASL to hundreds of thousands of little kids. Almost everyday we meet children that, thanks to "Signing Time" have seen ASL before, and are just a little more open to Miss Kat. Thank you Rachel Coleman for making my baby's life better.

So, that's my list. I'm sure in my ignorance I have missed some very important people, but these people have touched, and changed my beautiful daughter's life, and they have never known her. I have cried with thankfulness over the contribution of each of these people, and I can never repay them for what they have done for our family.

Thank you!

Phrases I never thought my Deaf child would say

Lately Miss Kat has been picking up some new phrases. These are things that no one has taught her, but that she has nonetheless picked up and now says all the time!

1. "Good job!"- She says this CONSTANTLY! She seems to think that everyone around her needs congratulated for doing anything. I think she believes we are all incompetent.
2. "You're welcome"- She now demands that this is replied after every "thank you"
3. "Ho ho ho"- This one just popped up this week. I have no idea how she knew what Santa says.
4. "Gimme five"- She loves giving high fives, and she has started asking for them recently.
5. "Trick or Treat"- I talked about this in my Halloween post. It was a big surprise.
6. "See you later"- This one isn't perfected yet. It still comes out "See me later, you" sometimes.
7. "In a minute" or "In a sec"- Ah, she says this in order to delay doing whatever I or Daddy have asked her to do.
8. "Mother"- I have always been Mama, but in the last few weeks I have been called Mom and even Mother. I have no idea where that came from!
9. "Gary"- Gary, for those of you who don't know, for is the name of SpongeBob Squarepants' pet snail. I didn't even know his name until she told me (Hubby confirmed it) She also tells me about his buddy Patrick, but she has yet to mention Squidward. Maybe it is coming...

These are all things that Miss Kat has picked up from other kids, adults, and even the TV. She is overhearing language and then using it! I know she learning it this way because I wouldn't be caught dead teaching her about Gary! Nobody teaches "Give me five" in therapy. It is amazing.

I remember the first sign she learned at school. It was "cool". I knew she picked up at school because I never ever used that sign. She also picked up "WOW", "gross", "BOO", and something to the effect of "getting your head chopped off". They learn so many great things from their peers...

Back to normal

So, Miss Kat loves school again. I think our prior freak out was due to two separate issues. First, it's growth spurt time! Miss Kat is growing like a weed, and eating like a pig. Second, the 1st grade had it's Christmas program. It didn't go very well for Miss Kat (or for any of the deaf kids in the class). In the past, at the bi-bi school, the Christmas program has always been one of my favorite events of the year. They are super creative, and always have really funny skits, and the kids and parents really enjoy it. I cried from happiness every year. It always reminded me of what a perfect fit the school was and how much they understood the needs and personalities of the Deaf kids. This year was very different. I still cried, but for a totally different reason.

I hated the program. It was literally, nothing but the kids singing. Miss Kat couldn't follow any of it, and she was totally lost. She was a trooper, and she enjoyed standing on the stage, winking at me, and having me take pictures, but she didn't know a single word of any of the songs. None of the deaf kids did. It was horrible to watch. They had been working on these songs for weeks, no wonder she didn't like school! I wouldn't want to go to a place to try to learn 6 songs in Ndebele (a regional dialect of Zimbabwe) it would be overwhelming, frustrating, and in the end, completely futile. That must have been what Miss Kat was feeling too. I spoke to Miss Kat's teacher, and she felt the same way. She was very upset and cried during the program too. She knew that the kids weren't understanding, but the whole thing was out of her control. Maybe next year, I'll raise a fuss, and have Miss Kat excluded from things like this, it seems like an opportunity just to frustrate her, and waste time, not something I'm looking for!

So, on Friday, the last day of school before break, I went by the school and surprised Miss Kat. She was very excited to see me, but much more to show her Grammy around the school. She showed her the classroom, and taught her everything that she could. She is very happy again, and tells her teacher that she loves her. I'm so glad the crisis has past. But, we are still keeping our eyes open, and we are actually seeking out professional advice on how to make sure this time of transition of a positive one. We are trying to make sure that Miss Kat continues to know that we love her, we love that she is Deaf, and we love ASL and the Deaf community. We want her to know that we do NOT believe that she is "broken" or that she needed "fixed" by a cochlear implant. She will know that ASL is a beautiful language, equal in importance as English. She will know that we want her to be forever Deaf, and for her to celebrate that.

And on that note, I would like to thank my anonymous commenters for nothing! If you don't actually have advice, but instead want simply to spew your own dogma, write your own blog, don't comment here. I choose not to moderate my comments at all, but seriously, if you don't actually have something constructive to say, why are you commenting?

She doesn't like school?

Ok, I'm really upset, so I might ramble.

Miss Kat goes to an oral school now. It is new this year, she had been in a signing school since she was 3. She has always been very excited about school and been a very good student.

This week she has been telling us that she doesn't like school anymore. She says that she doesn't like her teacher, and that she is mean to her. She says she doesn't like her new friends and wants to go back to her old friends.

She also says that she wants to sign AND talk, but that her teacher says that she isn't allowed to sign.

So, I called the teacher. The teacher confirmed everything. She said that Miss Kat seems unhappy, and that she has been being a little defiant. (Which is NOT at all like her, she is very eager to please) She said that she feels like Miss Kat is being "very dependant on sign" and that every week-end she shows back up "not using her voice" and that she has stopped using sign with her too. She says that she tells Miss Kat to stop signing during class, that she can do it at recess, but that in class she isn't allowed to, that she needs to use her voice.

I'm terribly upset. We were scared of just this thing. There is no TC environment. It is oral or voice-off ASL. We want her to be bilingual, and when we placed her, they promised that "our focus is on listening-speaking but sign is not forbidden". She has only been hearing well for a year! Her first language is ASL! Why would she be getting in trouble for signing? This isn't ok with me.

I'm so scared. I want her to succeed, and I want her to be happy. What do we do now?

Last week-end we had a big Deaf community event and she got to see all her Deaf friends. She had a really good time. Is she just missing them?

Teacher also said that after every week-end she shows up not wanting to use her voice. I felt like she was implying that we are signing too much at home, and so she has to "start over" every week.

Please, help. I know most of you aren't in the same situation, but does anyone have advice?

This is my worst nightmare, having her be unhappy. We always promised that Miss Kat's happiness was more important than anything. We will give up or change anything to make sure she is happy.

Thanksgiving Grace

Our wonderful 6 year old chose herself to say grace before Thanksgiving today. Her prayer went as follows:

"I am thankful that Mommy, Daddy and I can come here to Grammy's house to eat turkey. Tomorrow I will come and sleep at Grammy's. Then, it will be Christmas! We will open presents. I will get a music box. Surprise! And then, I will go to see The Princess and the Frog. AMEN!"

*Note: This is an ASL to written English translation. You are missing out on all the enthusiasm and "matter of factness" than comes from a 6 year old laying out her plan.

*Second note: My kid is an idiot.

1 year ago today

There is more to come on this post. I'm working on spliting the video and add subtitles.

Miss Kat's first report card!!!

Today was parent-teacher conferences and we got Miss Kat's first official report card.

She did amazing!!!

Her strongest subject is math, she is grade level appropriate and will pass her goals (which are just the 1st grade curriculum requirements) with no problem. The only problem she is having in math is that she says "three one" for 31 (and so on).

Her weakest subject was reading, but that was to be expected. She is completely changing modalities of reading (from sight words only to phonics) and that is taking some adjustment. When we started the year Miss Kat knew the sounds of 4 letters. She now can name and produce all but: Z (very tough sound, very high frequency), Y and Q (are you kidding me??) WAY TO GO MISS KAT!!! She has also gained 32 sight words.

Miss Kat also got very high marks in "Respects self and others" and "Works cooperatively with others". That's because she is the sweetest girl ever, and a really good friend. (And she got a "perfect" in turning in homework, but that is really mine and Daddy's grade!)

Not bad for a first quarter!

Miss Kat's teacher also showed me a piece of work that she did in class around Halloween. The teacher asked the kids the draw a picture of their favorite candy and write "I like____" The kids all knew how to write "I" and "like" but they were supposed to try to figure out the spelling for their last word. Miss Kat wrote "I like apl" and she drew some caramel apples. She sounded out APPLE!!!!

When I started researching literacy and the deaf child, one of my biggest concerns was phonics and this very stage. Kids, when they are learning to read and write, need to go through a stage when they sound out the words and invent a spelling. I really, never thought in a million years that Miss Kat would be able to do that! And, here, after less than a year post-CI, she can do it. And developmentally, right on time! And it wasn't a bad guess, if I do say so myself!

Town Hall

So, I don't know how many people who are reading this follow Deaf education politics in Utah, so I will summarize....

Utah Schools for the Deaf and Blind recently appointed a new superintendent. He worked for USD in the past, but his most recent job was running Tucker Maxon Oral school. He is an oral advocate. The Deaf community, here, is up in arms about it! They think that he is too biased to provide appropriate services to those who do not choose and oral path for their children. So, he appointed an assistant superintendent. She is also hearing, but she is a strong advocate for ASL and she is a fluent signer.

So, we had a "Town Hall" meeting to discuss the "future of Deaf education in Utah".

The superintendent gave his presentation. It was focused on parental choice, and technological advances. But we did get the good news that the bi-bi school will soon have a high school option. That is AMAZING news. It is wonderful that ASL kids will now have the option of direct communication with their teachers in high school. I could not be happier about that!

He also emphasised that they will be putting a lot of time and energy into the Parent Infant Program. He believes that the birth to three age range is the most important for language growth. He says that too many of our kids are showing up to preschool with no language. I agree with this as well. I think Miss Kat did OK during PIP, but that, if given the right professionals and access to quality interactions (therapy, etc) she could have done much better. He said that he wants all his PIP advisers to be highly qualified (AV or ASL certified).


That was all very good.......and then we opened the floor for questions.......


I asked the second question. My question was:

"We have these two really great paths for education (oral and bi-bi) BUT what do we do about the kids in the middle? The bi-bi school can't provide access to fluent spoken language on a daily basis but there are kids who can't, or don't want to, be oral only. What can we do for these kids?"
They didn't really answer my question. I didn't hear any new thoughts or strategies on how to educate a child who uses ASL but also has access to spoken language. Oh well, I guess we will keep blazing a new path for Miss Kat....

Some of my favorite highlights of the night:

(The superintendent said he was tired of the infighting between the people who choose an oral route and those use ASL) So a Deaf adult said "I'm sure you are sick of the fighting after (the few years of his career), we Deaf people are sick of it after 300 years!"

Another Deaf adult claimed he worked at the Oregon School for the Deaf, and had encountered "all the students that Tucker Maxon had failed". The superintendent was livid about that statement. He said that Tucker Maxon followed ALL of their graduates and that over 95% went on to graduate college. YIKES!

One last Deaf adult asked how he can allow parents to choose AVT when "There is so much research out there that shows that learning ASL improves literacy." The superintendent said that he was no going to "Get into a war of research, but that we need to respect parental choice. If the Deaf community wants parents to feel comfortable with them, and have their children interact with the community, they need to welcome families with open arms, regardless of their communication choices."

So, it wasn't a terribly productive night, but it was interesting. I continue to reserve judgement on the superintendent, until I see what changes he makes, and what direction the School for the Deaf is headed.

Conference, part 3

Miss Kat's audiologist also gave a lecture. It was called "I'm lost, I need a MAP". Cute, isn't it! He went over exactly what happens when you MAP a cochlear implant, and how each of those things help the child hear better.

I didn't go to his lecture. He told me it would be too boring. He said that he tells me what he is doing, when he is doing it, when he MAPs Miss Kat. He said I was already too well informed, that I should go listen to something else!

So, I went to the lecture aimed at professionals. It was about using an auditory skills curriculum (in her practice, the AuSpLan) to measure and facilitate growth.

In aural/oral education, there are three areas of skill that must be developed. They are auditory skills, speech, and language. (See, Au Sp Lan....clever) All three areas need focus, and they are all important. Without auditory skills, a child will be unable to understand the things that are being said to them. Without the speech, they can not make their thoughts understood by others. And without language, well, we all know the issues of not having language....

So, back to the Ausplan. The idea of the curriculum is that it is a very, step by step, progression of skills. A child needs to master one before they can move on to the next. It goes piece by piece, in all three areas, showing goals and the steps toward spoken language fluency. I like that it gives very real, measurable things to work from, and a sort of timeline to help gauge the progress.

I ordered my AuSpLan today!


So, I learned a lot at the conference. I feel like it was a good use of my time, and I can apply the things I learned toward Miss Kat's language skills.

Conference Continued

Our speaker also discussed the 10 factors that determine success with a cochlear implant. Some of them are under a parent's control, others are completely within the child.



1. Age of implantation (the earlier the better)

2. Commitment (auditory vigilance)

3. Use of the device

4. Gap between onset of hearing loss and activation

5. Attitude (the child's behavior and feelings about the CI)

6. Home support

7. Attitude toward overcoming challenges (the child's personality)

8. Presence of other handicaps

9. Expectations (setting the bar high enough)

10. Other (MAPs, anatomy, device issues)



These things are the keys to setting our expectations. If we know all these factors, we can figure out where the bar should be placed for our children. None of these are reasons a person should NOT get a CI, but they are the mitigating factors that will determine how much benefit the child will get. That in turn will influence where on the "Communication Continuum" the child will be.



Our second class was about how to get our kids to the best possible place. How to help them achieve and reach their full potential.


First we talked about the thought/language connection. Without one, you can not have the other. A child needs language to organize their thoughts. If a child is language deprived for more than a few years (I believe that JTC said age 5) it starts to affect their permanent cognitive development. So, if a child is without language, it can actually start to make them less smart!

Language is the foundation for thought, communication, learning, behavior, emotional expression, personal control, social interaction...FOR LIVING!


She was also very adamant about the fact that words do NOT equal language. She said that there is a whole group of children who will never get past the word level of spoken language. These kids will need another language, a visual language, so that they can fully use higher level thinking. These kids get out 3 years post activation and they are still at the word level. They are unable to use language to infer information, they do not have higher level thinking skills. The problem is that when they then switch to a signed language, most of them still never reach that highest level of language, even in sign.


So....why?


Well, it is too late. These kids were not given a fully accessible, fluent language from the start. They do not have full immersion in the language either. Their cognitive abilities are compromised because they were without language for too long. They never become able to fluently use a language, understand grammar and syntax, and become completely literate.


So...what do we do?


Well, I would advocate ASL from the start for ALL children with a hearing loss. ESPECIALLY, those who are older identified, older implanted, or have other issues (see the above list!) If given this fluent, accessibly language, no matter what the outcome with their CI, they will be able to achieve literacy and future success.

A (AG Bell) Conference Week-end

So, last Saturday, I went to the Utah AG Bell conference. I will say now that, as anyone who has ever spoken to me knows, I am not a big fan of Bell himself (though, in his defense, many great minds of that time were interested in eugenics, but he targeted deaf people, and that affects me!) or of the organization (why is a organization for deaf people nearly completely comprised of, and controlled by, hearing people?) But, I figured they had a lot of good information for me to help Miss Kat on her journey with spoken language. This is a new area for me, and I have a lot left to learn. (When Miss Kat was ASL only, we spent all our time looking for resources to help her, and our, ASL grow and working on her pre-literacy skills.) So, I figured we can use their expertise in the area, even if we do not agree with their "dogma".

I have to say that it was a really great experience. I learned a ton, and got to talk to some other parents (always a pleasure!)

Our keynote speaker was Adeline McClatchie. She is a great audiologist, certified AVT and the creator of Ausplan. One of her key points throughout the day was that we need to focus on "Is this what this child NEEDS?" not "This is what I want for my child".

I thought that was a very important point. As parents, we are continually making decisions for our children. Technology decisions, school placements, language choices, these are things we don't just decide once. We must constantly be monitoring our child's progress to make sure they are thriving and that are still on the path that is right for them, not just the one that we want.

The speaker was very adamant that the key is LANGUAGE. You need to immerse a child in a language so that they can learn. The whole point of language is to give a child the ability to express their thoughts. She didn't care what language it was, just make sure they are getting it.

She talked about the "communication continuum". She emphasised that functional communication is what is needed. We need to find what works for the child and gives them the freedom to communicate their thoughts and needs. (NOT what we want for the child to become)

A--Av--AV--Va--V

A-Auditory only- This is the Auditory verbal philosophy. A child uses audition only. There is no visual information provided. (No sign, no cuing, not even lipreading)

Av-Auditory with visual assist- This is an auditory oral approach. The child primarily uses audition for communication, but is also given visual information to help support the auditory. This could be through lipreading, cued speech, or even key word signing. (This is where Miss Kat is right now.)

AV- Auditory and Visual- This piece of the continuum emphasises both audition AND a visual language equally. A TC program would fall into this category. (IF it is done right! Some programs are clearly just remedial oral programs, for those who "couldn't cut it" in an oral only environment and they are trying to "catch them up" so they can go oral. Or sometimes TC is "dumping ground" for multiple handicapped children.)

Va- Visual with auditory assist- This is a mode in which the visual language is primary, but amplifacation is worn to assist in life. Audition would be used to hear enviromental sounds, get attention, assist with lipreading, or even to learn common phrases. (This is where Miss Kat was pre-CI.)

V- Visual only- This is a visual only choice. Amplification or audition is not used.

So, as parents, these are our choices. We need to figure out where our child will most comfortably fit, and where they will THRIVE.

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.

Our final IEP....for now

Today was the big IEP meeting. With only 6 days remaining before school begins, we had to finally choose a placement for Miss Kat.

(A reminder for the folks at home), our choices are:

1. ASL bilingual bicultural, voice off program. She can receive up to 40 minutes a week (though in the past it has been limited to 20) of SPEECH therapy. It is not spoken language or aural rehab, simply speech. All of speech therapy will be conducted in SIM-COM. "SLP" has never worked on spoken language acquisition in deaf children with CI's. She herself admits she doesn't know what to do, and only knows "speech". Interaction in spoken language in the classroom would be limited to phonetic awareness, and always used with signing.

2. Auditory oral (oral only) classroom for the deaf. Miss Kat would get no ASL support here. No one signs or understands sign.

3. Mainstream with an interpreter. She wouldn't have any direct instruction from a Teacher of the Deaf and she would be the only deaf child in the school. Oh, and our neighborhood school sucks!

So, we sat down at the table, with the booklet that I sent out to all the team members. It was a compilation of all the assessments Miss Kat has had, her audiograms, and our goals. Right from the start I said, "We believe that Miss Kat will use ASL everyday for the rest of her life. We also believe that she can learn to listen and to speak. We don't mean that she will use an interpreter, or a pen and paper when she communicates with hearing people. We don't mean that she will lipread, or that she will learn a few simple phrases. We believe that she will use and understand spoken language fluently. So, we need to find a plan that will help her achieve this."

What we finally came up with was this: Miss Kat will be attending the Oral deaf education class. She will receive Teacher of the Deaf services from a teacher who specialises in ASL, at least once a week, for 30 minutes. That teacher will pre-teach material from the classroom, bridge information, and just generally continue to help Miss Kat learn and use ASL. We are sort of modeling as "ASL therapy" pull-outs instead of speech!

We will be having another IEP with the new teachers to write new goals.

This IEP is valid for the first semester. We will be having another meeting to reassess after that time, to make sure this placement is working.

This is the very short and tidy version. I have cut out all the crying and the confession that Miss Kat told me she want to go to the "talking school" and all my fears about becoming the dreaded "oral mom".

I think this is the best plan we could come up with. I am glad we found a way to make sure Miss Kat is still getting ASL. We are also going to continue to be active in the Deaf community, and attend our Deaf church. We have a monthly playdate set up with one of Miss Kat's best friends, and we will be attending the bi-bi school's 10th anniversary party a week from Saturday.
.
Yeah, Miss Kat will still be signing. We want her to be BI-lingual. We have spent 5 years on her L1 (ASL) and now the focus is shifting to emphasis her L2 (English). It has been a difficult decision, but we need to allow her the opportunity to succeed in both, and this is what
we believe is the best way to make sure that can happen.

I hate....and choices

I hate that "philosophy" is more important than educating my child.
I hate that while it is supposed to be an INDIVIDUAL education plan, the only thing that is individual is her goals.
I hate that no one WANTS to think outside the box.
I hate that if your child is beyond 0-4, you can't get good services for spoken language.
I hate that I feel like I will be disappointing my Deaf friends if Miss Kat goes to the oral class.
I hate that we don't have professionals who want a bilingual-bimodal child.
I hate that now that she is learning spoken language everyone think that we should stop ASL.
I hate that Deaf people have taught me that oral is a dirty word.
I hate that I have to deal with Miss Kat learning to read on top of all this other garbage.
I hate that I can't see the future, and know what she would want.
I hate that I live in constant fear of making the wrong choice.
I hate that I believe that there really is one right choice and one wrong.
I hate that I am afraid that of Miss Kat changes schools, she will lose all her Deaf friends.
I hate that I am afraid that my own daughter will hate and resent me when she grows up.

Why do I have to live in all this fear? Why can't my daughter be Deaf AND hear? Why can't she grow up with BOTH? Why can't we emphasis one language sometimes, and the other at other times?

You know what? We can. Yes, right now there is a short window of opportunity for Miss Kat to get the greatest benefit from her CI. We need to place her with professionals that understand and can facilitate spoken language development in a deaf child with a CI. We have been EXTREMELY focused on ASL for the last 5 years, but our focus is going to need to change, in the short term. But, I REFUSE to be bullied about it. I know my daughter, and I know that this is in her best interest. I know that there is going to be some "discomfort" with this choice in our Deaf community, but Miss Kat is still Deaf, and she will still need her community. I hope that people will not punish Miss Kat for our choices. We love the Deaf Community, and the wonderful people we have met in it.

We are not choosing to "ban" ASL, or trying to make Miss Kat "hearing". We are giving her the opportunity to work on the other language. She will forever sign, and so will we, but it looks like, this fall, Miss Kat will be heading to the oral class.

Bye-Bye Bilateral

I want to start by sharing a comment I left on someone elses blog about JTC. It was left in response to someone asking how JTC can possibly NOT be anti-ASL:

My experience was that they were not ANTI- anything, as long as it was working for your child. We are seriously the best signing hearing family you will ever meet, and they accepted Miss Kat, and had no problem with her signing in the classroom. It is a language, and it is how she communicates, what is there to be "against"? They are simply experts at oral language development. That is why you go there. They don't teach ASL, and they aren't the experts in that field, but that doesn't make it a bad thing. I would never ask my gyno about a CI, so I don't ask JTC for information about ASL and ASL development. I found that they were FAR more interested in whole child development than in being dogmatic about "oralism". They want each family to figure out what works for their child, and they are here to provide tools for those who desire spoken language for their child.

There you go! On to the reason behind this post-

So...we missed the deadline for open enrollment while I was at JTC, so we will not be getting a bilateral implant this year. Instead, we will be getting a Phonak Naida hearing aid. I'm not happy, but I really can't do squat about it, so I'm hoping the hearing aid will at least improve her hearing some. (But we all know I don't believe it will)

Our IEP is scheduled for August 18th. We have no idea what we want, or how to get it, but we will be going in strong with great goals, and a positive outlook. And with my sunny disposition and winning personality, how could we not get everything Miss Kat needs?

Home, and on....

So after we got back from JTC, I couldn't face another month living in a dorm without Hubby (and therefore Daddy), so we changed the plans for the rest of the summer. Miss Kat is now going to Sound Beginnings only twice a week. We are driving the two hours each way and living happily at home. The drive is doable (Thanks Veda, if you could do it everyday, I can do it twice a week for my girl).

Sound Beginnings isn't JTC. I suppose it is a great school, and the kids are doing wonderfully, but it is just missing some of the things that I like about JTC so much. They don't sing very much. Also, at JTC, they had 2 aides in the classroom to help facilitate language at all times. For example, the kids are all sitting at the table facing the teacher.

Teacher: "Miss Kat, would you like a drink of apple juice?"

Miss Kat: looks around....

Aide: "Miss Kat, Teacher asked if you want a drink"

Miss Kat:"Yes. Juice"

Aide: "Oh, you want a drink of juice. Tell Teacher, you want a drink of apple juice"

Miss Kat: "Want drink apple juice"

JTC also went out of their way to make sure the kids were able to hear everything very well. They had a sound field for circle time, and they would position the kids so their better ear was always being spoken to. The music was played loud enough for everyone to hear, and they made sure to always repeat, repeat, repeat, and PAUSE for the responses. This class just seems to treat the kids like they are Hearing. Maybe it is because at JTC, our kids were considered "beginning listeners" and most of the kids here are headed to be mainstreamed next month. Maybe they are preparing them for the mainstream. That's great for them, but that's not really what Miss Kat needs! But the good news is that she is getting therapy from a cert. AVT, and the AVT is doing more testing, and giving me lots of things for doing at home.

On the home front, Miss Kat loves the song "Slippery Fish". We have to sing it at least twice a day. I think it is because she gets to pretend to burp at the end and say "'Cuse Me!" at the end. This song has lead to a sudden epidemic of belching in our home. Hubby says I can't be mad because she says "Excuse me" afterwards....I disagree.

We have an IEP very soon. We still have no idea what we are going to do for Miss Kat's placement. I do however have plenty of testing to prove that she needs spoken language. She is doing very well, and to place her in a voice-off, ASL only environment would NOT be the least restrictive environment. On the other hand, she is clearly a native ASL user, so an oral only placement would be just as restrictive. It's time for new ideas!

Also, our "SLP" sent me a note. I gave her a simple checklist about expressive and receptive spoken language. She wrote that she "was not able to fill it out" since it "dealt with language" and she "only works on speech". WELL, that is grossly inappropriate! She is a S*L*P, speech LANGUAGE pathologist. Why can't she work on or even assess language? That will be great ammunition for the meeting!

Miss Kat will need goals in:

Receptive ASL

Expressive ASL

Receptive spoken English

Expressive spoken English

Auditory Skills

Speech and articulation

And they need to show ONE YEAR'S MEASURABLE PROGRESS!

That should take awhile! And once we get all those goals, we will need to find (or make) a program that will provide an environment in which she will be able to meet those goals.

Week 3, Day 4

Today was a mixed day. We started the day with our last meeting with Miss Kat's SLT. She started going over Miss Kat's testing. I got really upset. On the PLS-IV, she got 2 years 7 months expressive language level, and 2 years 11 months receptive language. I just got really overhelmed. I felt like she was making so much progress and when I saw those numbers I got really depressed and overwhelmed. She is 6 and she barely made it to 2 1/2. What are we supposed to do??

So, the teachers told me, since I don't like to consider her hearing age only 7 months (she had hearing aids for 4 years 7 months before her activation, does that time count for nothing??), what if we split the difference. We take half her hearing aid time, plus the CI. So, that would be 31 months or 2 years 5 months......hmmmm, maybe she is doing ok

Week 3, Day 3

The week is coming to an end, and so is our time at the John Tracy Clinic.The classes are defiantly getting more intense and in-depth. Especially "speech", it is so complicated! But more about that later...

As I mentioned before, the first 45 minutes of school the parents spend in class with our kids, using the skills we are learning. Today, Miss Kat and I lead a song! We sang "Monkey and Alligator". She LOVED being Mr. Alligator, and SNAPing the monkeys "right out of that tree". By the end, Miss Kat was trying to sing along all the words, and she has NEVER sung. She likes having me sing, and she loves adding key words, but she has never tried to sing the entire song before.

So, our first class of the day was about social interactions and deaf children. We went over the major reasons that social interactions and communication break down between deaf and hearing kids:
1. Having a different level of auditory skills than peers. (a lower level)
2. Not being understood by peers.
3. Not knowing the slang or general language used by the group.
4. Being unable to successfully enter a group.
5. Being unable to follow directions.
6. Being unable to stay on, or maintain a topic.
7. Unable to change topic appropriately
8. Inappropriately interacting during play.
9. Not knowing the rules of play.
10. Not being up to date with peers interesting toys, movies, latest crazies, etc.
11. Being unaware of others feelings.

Angie Stokes, the preschool director and our teacher, mentioned that when parents mainstream their children, they are always worried about academics (and rightly so). They make all the preparations to make sure that the child will succeed academically, but that the mainstream teachers consistently come back and say that the kids do great academically, BUT that it is their social skills that are holding them back. So, I am going to go through the above list, point by point, and explain why.

1. Obviously if a child's auditory skills are poor, they will have trouble understanding the other children, especially in groups or in a noisy classroom.
2. Children generally will give one, maybe two chances for our kids to make themselves understood, after that, they are going to give up and walk away. That is why the speech and articulation piece is still important.
3. If your child doesn't know what the other kids are talking about, they are going to be left behind.
4. Entering a group is very important. And within that, coping with being rejected, regrouping, and trying again. (Apparently, the whole key is bring something to the group, and ask if they want to play with your toy) A huge part of teaching this skill is role playing. "What can we do differently next time?"Also, teaching to ask if they can join, and how to introduce themselves.
5. Following directions is key in cooperative play. If you can't follow the directions given by the other kids, they will get mad because they feel like you are "ruining the game".
6. Staying on topic is a skill that develops with age. At 2, we would expect 2 turns in conversation. Then you add one turn per year of age.
7. Our kids tend to try to control conversations because they don't want to get left behind. If they are talking, they won't get confused. "If we talk about something I know, I will be able to follow the conversation" Therefore, sometimes they have trouble relinquishing control.
8. Again, a lot of kids with language delays tend to want to play more physically, because then they don't have to communicate. It is a lot easier to play tag, than have a tea party, for a child with limited language skills.
9. Cooperative play involves a lot of "rules", and if our kids don't have the language to understand what the other kids want, communication will break down. Pre-teaching, and playing these games at home, or with understanding, patient peers (like a cousin) will help our kids get the language, and understand the rules.
10. TRENDS TRENDS TRENDS! So, make sure your kids watch "High School Musical". (Oh god, I think I just threw up in my mouth! Never thought I would ever give that advice!!!)
11. Our kids miss out on a lot of incidental learning, because they don't "overhear" well. So we need to make sure they understand social cues. We have to explain emotions and manners and how to react in a socially acceptable way.

I really don't know how I felt about this whole class. I don't like the idea of Miss Kat being rejected and I would just prefer to keep her in situations where I know she will be successful, and won't be rejected. I guess it is impossible to do that forever, and that I need to help her be prepared and help her learn to be successful in ALL situations. It just hurts so much. Coaching her on trends and slang so she can be cool? The whole subject made me nauseous.

Our next lesson was on "Vocal Play" vs. formal speech. The first point made was that EVERY speech sound can be learned through vocal play. Mary mentioned the "Learning to Listen" toys and sounds. http://www.listen-up.org/dnload/listen.pdf and their use for little ones. Also, SING SING SING! Singing is a great way to teach DIP (duration, intensity, and pitch) which is the very first step to speech. Add songs to all your daily routines. (I must admit that we are just starting to sing again. We haven't for 4 years. I felt stupid singing to a deaf kid. I thought "What is the point?" But now, Miss Kat LOVES it, and I am happy to have it back.)

Ok, on to formal speech.

SPEECH IS AN ACOUSTIC EVENT
We speak BECAUSE we hear.
We speak WHAT we hear.

Therefore, the easiest, most effective way to teach (and learn) spoken language is through AUDITION! Seems simple enough, right? As long as our kids are hearing wellenough, all aspects of speech can be developed through listening.

So, let's say you have been doing your vocal play but your SLT thinks that developmentally your child should have developed a sound and they haven't. That is when formal speech teaching happens. (NEVER before age 3, and only sounds that should already be there developmentally:



So, for each speech target:
1. Choose the appropriate modality (First auditorily, then visual or tactile)
2. Work from the known to the unknown. So, for a sound that they don't know, find one that they do know. It needs to share manner, placement, or voice. (For example, "p" and "b" share manner, and "d" and "n" share placement.)

Confused yet?

The goals of phonetic and phonological speech teaching are:
-Accuracy (we want their speech to be intelligible)
-Economy of effort (speaking should not be work)
-Speed (they need to speak at a normal rate)
-Flexibility (they need to be able to alternate between different syllables with different vowels...sne sna sno)
-Automaticity (there shouldn't be tons of thought, it should flow naturally)

And, yes, all of that can be taught through listening! As long as our kids are hearing well, it is totally possible. I am seeing Miss Kat improving every single day. Now if only I could teach the SLP at her school...

Our last lesson of the day was on successful mainstreaming. This class didn't apply to Miss Kat yet, but it did give us some really good checklists that go by age, and what skills are needed for effectively and successfully being mainstreamed with hearing peers at each age.

The research shows that kiddos should not be mainstreamed until they have 75% intelligibility (by strangers) and are using 3 word phrases. They should be understood by peers in no more than 2 attempts. They also need to have very good distance hearing. (You need to find out how big your child's "hearing bubble" is. Do the Ling sounds further and further away. See how well they hear at 1, 5, 10, and 30 feet. For a mainstream classroom, they need to be discriminating ALL the sounds at 30+ feet)

So, after school, I asked Angie if she had any suggestions for Miss Kat's placement next year. She came up with a miracle! She suggested that Miss Kat stay at the bi-bi school 3 days a week (for ASL and academics) and then go to the oral deaf KINDERGARTEN for the other 2 days! This way she can play catch up with her spoken language in an environment that she doesn't have to worry about academics. She will already know the stuff, so she just has to focus on picking up on the language. Also, she will be at the bi-bi school 3 days a week, in a row, so we won't be sacrificing ASL or her academics in 1st grade. The idea really feels right, and it did to Hubby too. I finally feel like there is a workable plan for Miss Kat!!

Week 3, Day 1

Today we talked about behavior management and we watched "Sound and Fury" and "6 years later" and had a discussion afterwards. Miss Kat also had an audiology appointment.

I have seen the movies before and I blogged about my thoughts here: http://misskatsmom.blogspot.com/2008/11/sound-and-fury.html The one thing I would like to add is that while I think it is great that they decided to get the implants and that it did make a huge difference for their family, I HATE that the hearing Grandma comes off as the "hero". I HATE that she thinks she was right all along and that the parents were wrong and that the implant really does "take away the problems of deafness". That is crap and that woman is a huge b****! If a family wants a CI for their child, that is their decision and if a parent decides that it isn't for their child, that is ok too. It isn't the decision I would make (obviously!) but I don't know their life or their child, so it isn't my business.

Miss Kat's audiology appointment was a speech test with just her hearing aid. She got 20%. With her CI and hearing aid together she got 70% on the same test just a few weeks ago. That is a very big difference. I think after the summer is finished she will score even better. She is making measurable progress every single day. Even the other parents are commenting on the difference in Miss Kat's spoken language skills. So, it wasn't fun watching her fail the test, but it is good evidence that she needs another CI. Just looking at Miss Kat's audiogram, it looks like she is hearing very well with her hearing aid, but she is just not able to use what she is hearing. The tones in the booth, she can detect pretty softly, but once it is put into language, she just isn't getting it. The audiologist mentioned that Miss Kat may have "cochlear dead zones", but that they can't test for that. The idea is that if there is a (or many) spot inside the cochlea that has no hairs (or completely useless hairs), there is nothing to transmit the sounds. So, you can turn that hearing aid up and up, but no matter how loud it gets, it will not be able to transmit the sounds, and they will never make it to the brain. The implant bypasses all of that.

I asked the audiologist if it was uncommon for people to have "good looking" audiograms with hearing aids, but not to be able to use it. She said not at all. That is the reason that the requirements for implant candidacy have been "loosened". Even a few years ago (and some places today) Miss Kat would not have been a candidate. She had too much residual hearing. But it isn't about the numbers, it is about how the person is using the hearing they have. (What good is aided hearing that does not provide any good information? I get angry comments about "ruining" Miss Kat's hearing when she had "so much left". But, really, what good was it doing her? So, she could hear a very loud clap when her aids were off, and now she can't....ok....but know she can understand spoken language through LISTENING! That seems like a bigger benefit to me.)

I really go back and forth on the bilateral issue. I feel like having some residual hearing is helpful, and that having 1/2 acoustical 1/2 electrical hearing would be the best of both worlds, but in reality if she is missing 50% more with her hearing aid, that just isn't worth it. My biggest misgiving is the surgery. Everything went perfectly the first time and it feels like "tempting fate" to try and do it again. Though, a parent here pointed out that she has had enough bad things happen to her (at birth) to last 10 lifetimes! It is a hard decision.

JTC Week 2, Day 4

6/18/09

Our first class was all about experience books today. They are little books about the things we do everyday, to demonstrate things to children with very little language. For example, if the child is having trouble behaving in the grocery store, you would draw, or take pictures of every step of the trip and of the child behaving appropriately and perhaps a reward at the end. It also works for routines (bathtime, bedtime, school, etc) behavior (show biting and Mommy's angry face or time-out, etc) events (Disneyland, or surgery) or even far away family. They are very effective. The child knows exactly what is expected of them so they aren't thrown off by transitions or the unknown. And they work without struggling with language.

We used similar tools when Miss Kat was first diagnosed. When she was very young, we used a lot of pictures to explain where we were going and what was happening. We went and took pictures of every place we go (the store, playground, school, Nana's house, church, gas station, EVERYWHERE!) and then made a chart for the week. We had three slots for each day and we would put the pictures up so we could say "First we will go to the store, and then after we can go to the park" and that way she wouldn't throw a fit, plus she could connect the signs with the places in the pictures. But it didn't last very long. She quickly gained enough language that she understood what was going on and what was expected of her. I think experience books are very useful, but that they shouldn't be necessary for very long (though I suppose we still use a form of them by marking the calender, or reading a book about going to the hospital). I think that the reliance on pictures and not language should be very short lived. I think that if you are still using them after a year or so, your child might not be gaining enough language, and perhaps you should consider supplementing with another methodology (usually sign).

Our next lesson continued to expand on the "6 db rule". Physics says that every time you cut the distance from speaker to receiver in half, you add 6 db to the signal. So, say that I am speaking at 40 db, 6 ft from you, if I move to 3 feet away, it is now 46 db. Now if I move to only 1 1/2 feet away from your ear, my speech is at 52 db. If I move to 9 inches away I increase up to 58 db. If we half the distance again, now I am just 4.5 inches away (from Miss Kat's microphone) we are now up to 64 db. That is an addition of 24 db, simply by moving closer!

We also had a very long conversation with Mary McGinnis (name dropping, she is totally CI-world famous!) about static. She is very serious about preventing electrostatic discharge (ESD). She has seen some parents who are very fastidious about making sure that their child is never in a situation where they can get a shock, even going so far as to dress their child only in 100% cotton (synthetic fibers are more likely to cause ESD). But she also knew another parent who bought a ball pit for their CI kid! (Talk about static! Have you ever seen a kids hair when they are in a ball pit? It stands straight up!) Neither of them are wrong. The key is being informed about the risks and making a decision. If we are comfortable with a particular level of "danger", that is the parents' decision. The most important thing is to be informed about the issues and act in the best interest of our children.

Ok, now on to the more complicated and technical portion of our day. We have been talking about formants. Formants are the frequencies at which each phenom is heard. If the formants of a sound are different, they sound different. Each vowel has an initial and secondary formant. The problem is that many vowels share the first formant. If someone only has low frequency hearing, they will be unable to hear the second formant and won't be able to discrimanate between the vowels. If you look at our "Everything Audiogram":

You can see the formants are labeled at the appropriate frequencies within the speech banana. For example "m" and "u" (oooo), both first formants are at just over 250 hz. So, if your child can't hear the second "u" formant at 1000 hz, they won't be able to discriminate those two sounds. The first formant for "i" (eee, I believe) is also around 250 hz, but the second isn't until 3000 hz. This is why high frequency hearing is sooooo important for speech comprehension! If you can't discriminate between sounds, you will never be able to understand spoken language.

JTC Week 2, Day 3

6/17/09

Today was a day of mixed feelings. We had a panel of deaf adults. The thing I came away with was "missing". The adults talked about the services they had in school and they talked about advocating for themselves. They seemed okay with the fact that they often missed information or needed special help...WHY?? Why is it ok that you aren't getting everything? Why is unequal access acceptable? I'm just NOT ok with that. Maybe I'm being naive, maybe it's because I've only been on this path for 6 years (they have been living it for 30), or maybe it is a fundamental philosophy difference. I don't know, but I need to figure out how I feel about it, and what it means for Miss Kat. (In defense of JTC, they provided realtime captioning for the panel, so they didn't miss anything here, but they were discussing school 15+ years ago and their social interactions.)

*I also want to mention that all of the deaf adults knew ASL to varying degrees, but none of them used it as their primary communication mode*

The second speaker of the day was an ENT. He talked about the steps for discovering the cause of a hearing loss. He talked about many syndromes that can be connected to a sensorineural hearing loss. I realized that Miss Kat was NEVER tested for anything. The ENT and audiologist heard her medical history and just assumed that the loss was caused by the drugs, or lack of oxygen. They never did any blood tests or other studies to see if there is a genetic cause. She didn't even get a CT or MRI until it was time to get her CI. What if she had LVAS? Or a conductive loss? Why didn't anyone bother to check?? I'm outraged! There are fatal complications that can be first signaled by a hearing loss. Why didn't the doctors care enough to check these things out for my little girl?

We had another meeting with Miss Kat's SLT. I brought up my concerns about her hearing aid and her stress level. I really fear that the hearing aid will overpower the clarity of her CI. I also called our regular audiologist and asked him the same question. He told me that the CI signal is so much better and stronger, that it will always be dominate (theoretically), but to always keep an eye out for a change in her performance.

As for the behavior/stress issues, she is doing much better, but one interesting little story. Miss Kat told me to stop talking, so I did. I turned my voice off and starting signing ASL. She got even madder and told me she could still hear me!?! What is that about?? Is there a voice in her head now? Is she translating ASL in her head? What is going on? She also told me that she could hear me when her device was off and she was lipreading me. (But when her device is off and I sign, she says she can't hear me...) The whole thing is weird.

So, back to the SLT. She is still assessing Miss Kat's speech and spoken language. She is using the PLS IV (http://www.tpccpg.com/support/index.php?View=entry&EntryID=2473) and a single word expressive vocab test. She also did a speech test to see what sounds Miss Kat is using, and what she still needs to work on. They are going to take these results and help we figure out the path for Miss Kat's IEP. Once we have appropriate goals in each area, she will be able to get the placement and services she needs. I hope it works!

JTC Week 2, Day 2

6/16/09

Ugh, I spent too long writing this morning and got a very late start.

We had an audiology appointment this morning at 9. We did a CI audiogram and reset her hearing aids and did a hearing aid audiogram. The results:

250 HZ- 25 db
500 HZ- 30 db
1000HZ- 30 db
2000HZ- 25 db
4000HZ- 15 db

Speech perception- "ahhh"- 20 db, "eeee"- 25 db, "ooo"- 35 db, "sss" 25db, "shh"- 30 db, "mmm"- 35 db.

I am not comfortable with the 35 db "mmm" and "ooo". I think her MAP needs to be tweaked. I think she is able to hear better than that. Now her hearing aid is hearing at much better levels too. It is set as "high" as her CI in several frequencies. That also has me worried. I am scared that the hearing aid (distortion) will overpower the CI (clarity).

Our first speakers today were an audiologist and surgeon from the House Ear Institute. They were talking about cochlear implants. I learned quite a bit about insertion. I learned about the "rear window" of the cochlea and that if you insert the electrode through the membrane there it can help to prevent damage to residual hearing (NO guarantees though, always be prepared to lose all hearing with a CI)

I also had the surgeon take a look at Miss Kat's brand new audiogram. He said that he did not feel that she should be a candidate for bilaterals. In fact, he seemed to question her getting the first CI. He said that there are too many benefits to "natural" (better word would be acoustical) hearing to go ahead with a CI on that side. I don't know what I think. I kinda feel like hearing aids are garbage! They have never helped Miss Kat. Maybe that is why I am so concerned about turning the aids up. I feel like they give her nothing but garbled speech. Why would I want to turn that noise up??

We also had a huge discussion about candidacy requirements and the politics involved in them. There is a mother here with a 5 year old who just got an implant about 2 months ago. She is profoundly deaf and never had hearing aids (or language) before a year ago, because she is recently adopted internationally. Her mother really wants to get a second CI but has been told it will not happen. She is frustrated because she is being told "earlier is better" and "two is better than one", but then is being denied that for her child. Why doesn't her daughter deserve the best too?

I can understand both sides. I know that the mother wants the very best for her child, but the professionals also have a point. They said that a CI (in a child) is meant to facilitate language learning. If a child is, say 6, and they don't have language and they get a CI and the parents spend the next 5 years working (very hard, as opposed to a very young child who naturally acquires the language)and then by some miracle they DO make 5 years progress, they are still 6 years behind! And school, doesn't get easier, the child will struggle so much. And that is the BEST case scenario! What is most likely to happen is that the child will make some progress, gain some benefit, but will never become an oral language user (and perhaps an implant non-user as well). And the CI will simply result in a huge delay in the child learning a language that they CAN use. It is a complicated issue. The professionals see it as being responsible, the mother sees it as discriminatory and judgemental.

The next class was called "Auditory Learning". It was about the "levels" of hearing and the 6 db rule. The levels are:

1. Detection- this is simply telling if there is sound or not.

2. Discrimination- this is telling the difference between two sounds.

3. Identification- this is knowing and labeling a sound.

4. Comprehension- this is understanding the meaning of the sound.


SO, if I walk outside and tell you to listen, and you hear that there is noise, that is detection. I tell you to listen, and know you can hear the difference between the two sounds I am pointing out, that is discrimination. I tell you to listen for the birds, and you hear it, and know it is birds tweeting, that is identification. Now, I tell you to listen, and tell me what kind of bird it is.....you don't know??? Why? You can hear perfectly, why can't you tell the difference? Because you don't know yet! It is something you need to learn. Just like Miss Kat needs to learn what the sounds she is hearing means- that is comprehension.

JTC Week 2 Day 1

6/15/09

Boy oh boy, what a weekend! But now we are back to school and back to work! (Miss Kat woke up this morning, turned over, smiled and signed "Disneyland?")

Our first class this week was about FM systems. The first thing we learned is the key to everything. Signal to Noise Ratio(SNR). When we are in a very quiet environment the speech of an individual (the signal) is much louder than all the background stuff (noise), so our children don't have to struggle to hear. The problem begins when the noise becomes louder. If the signal doesn't improve, it can get lost in the noise. People with a hearing loss need at least +15 db SNR for optimal speech understanding. But even 1 db of SNR improvement can equal 10% improvement in speech intelligibility. This is where the FM system comes into play. The FM boosts the speakers voice and puts it directly into the hearing aid or CI. Sounds perfect, right?The sticky point is that with a CI we can't listen to the FM, so we can't tell if it is working appropriately, we have to trust that the child will tell us if it doesn't sound right, or if there is static. Very young children or bad reporters (like Miss Kat!) can end up in a much worse situation if they are fitted with an FM system too early. (they could end up unamplified or hearing nothing but static all day, and that is much worse than a little background noise!)

I had an appointment with one of the counselors over the lunch break. We discussed my feelings about this transition time. As anyone reading this knows, I am terrified of pushing Miss Kat into becoming "oral". I don't want her to think that we were unhappy with her or with ASL, or that we in some way thought that spoken language was better or more important than sign. We want her to be BI-lingual. We want her to function, no, FLOURISH in both worlds. We want a child who fluently signs AND who can speak and understand spoken language to the very best of her ability. Right now we do not see a clear path to get her to that. Right now our choices are ASL/written English or Oral only. Neither of these are appropriate. Neither of those will get Miss Kat to reach her fullest potential. And that is not OK.

The last class of the day was on "Oral-peripheral Structures and Functions". It was all about our mouth, teeth and tongues and how those muscles work together for feeding and speech. It is such a complicated process it seems like a miracle that ANYONE learns how to speak! The structures that are used during speech include the glottis, jaw, palate, teeth, lips, and tongue. They each work in a specific way in speech and any dysfunction in one area will lead to trouble to articulating spoken language. So, in conclusion, if your kid is 3 and still drooling, get them checked out!

So, because it is nearly impossible to teach all the things that I learned in our oral-motor class our teachers have been emphasising how important listening is to speaking.

"We speak because we hear"

"We speak what we hear"

The speech class really confirmed this to me. It seems like an impossible task to teach every tongue placement, air pressure, etc. Better to just hear it appropriately and then after hearing well, the speech comes.

JTC Week 1 Day 5

6/12/09

Fridays are short days, we get done with class at noon, so we only had one class and our support group meeting (have I talked about support group yet? Almost everyday we have a group meeting with psychologists and we air our issues and talk about our feelings and struggles as parents of children with a hearing loss. It is a really great element of the program and very helpful....at least for me!)

Our lesson was about self-regulation. Our children (and ourselves!) need to be in an appropriate emotional state to be able to learn and their job, throughout life, is to learn how to maintain that level. If one goes too far one side, they get "too hot" and get angry and that is when tantrums happen (adult tantrums too!) But if one gets too far on the other side they become "too cold" and start getting tired and zone out. Often people get disregulated and are unable to stay at "just right". We need to watch our kids and make sure they are not too stressed and becoming disregulated. The key is to look for patterns and see how we can best support our kids.

Before school started, Miss Kat and I had an appointment with Miss Kat's SLT. We talked about language samples. With a language sample, you choose a period of time and write down every utterance that comes out of your child's mouth (it is helpful to have two people very familiar with the child to do this activity, that way one can interact and one can write). DO NOT FILL IN THE BLANKS!!! If Miss Kat said "Go car", I wrote "Go car", not "Go to the car", even though that is what she meant. First the SLT had me read Miss Kat a story and she wrote what she heard. Then we switched and she read to Miss Kat and I wrote. I wrote a lot more because I could understand her signs and therefore I could understand whether "buh" meant "boat" "ball" or "boy". It was very interesting. I am supposed to do them every month or so, so that I can see what kinds of words she is using, her semantics (grammar above 3 word combinations) and her "average length of utterance".

After the language sample the SLT gave me a booklet with a list of common words. I am supposed to make one with Miss Kat's signs and another with her spoken language. They highlight the average words that a child has in the first five years but it also lists a ton of different ones. It is organized by category so you just systematically go through and look at the list and mark both receptive and expressive vocabulary. I'm still making my way through the booklets.

After school was finished, Miss Kat and I headed over and took a tour of the Advanced Bionics factory. It only took about an hour, but it was very interesting.First the rep sat us down and showed us the internal chip and the old versions of the internal device. Then he showed us step by step how the pieces come together to become the 90k. The rep also took our questions!
1. We asked about waterproofing. He said that they are very cognisant of the fact that CI users want to be able to hear in the water so they are working on adapting the technology that is out there to waterproof microphones into a usable form for CI's.
2. He also mentioned that something will be coming along very soon to "get that (huge processor and battery) off her ear". He didn't get into it any more than that, just to watch for something new.
3. I also complained that there is no pink option for headpieces! He says he hears that a lot and that hopefully that will be changing soon too.

As we got to walk around and see the factory itself I learned some very interesting things. First, all the air systems (AC and heating) blow out. They blow out of the rooms so that dust and debris are getting blown out of the room every time the door opens. Also, they have sticky squares outside the doors. You step on them and it pulls the dirt off the bottom of your shoes. Also, any time a person is working with an internal device, they must wear a coat, booties, gloves, and a hairnet. They also take certain precautions against electrostatic discharge. The guide told us that there are only 3 people in the whole world who are qualified to work on the electrodes themselves. The electrodes are threaded and welded completely by hand. They also seal the internal device and then try to force helium inside it to make sure the seal is complete. Since helium is atomically the smallest element, if helium can't get in, neither can air or water or anything else. He also said that each internal device is signed off by an individual each step of the way. They certify that they have checked all the previous work and that is up to standards, as is their own. And that paper is kept forever, so if we pull up Miss Kat's serial number we could meet all the people who worked on and inspected her implant. The last thing he mentioned was that it takes 30 days to complete ONE internal device.....how amazing! That is a lot of work, but look at what it does!

JTC Week 1 Day 4

6/11/09

Today was an interesting day. I have been a little concerned because Miss Kat is in a class with all (but one) VERY beginning learners. Two have been adopted in the last year and the last has no language at all. None of them respond to their names or have any receptive or expressive language. They are not even able to understand environmental noises yet. The kids are between 3 ½ and 5, but they are all late IDed and late implanted, she is functioning well above this level. So, today I made the leap and asked them if they should move Miss Kat to the other classroom. My biggest concern is that she will get left behind in the new class. Those kids are doing so well! They understand and express themselves amazingly. I worry that Miss Kat will get lost or left out because the other kids don’t understand her.

So, we took the leap and moved Miss Kat to the other room. The teacher thinks it was a good move and that she will rise to the occasion. They think she is fitting in perfectly (though the class is ALL boys and some of them are very handsome ).

In other news, we went and saw the science center. It was closed after school so we didn't get to go inside but we got to lift a truck using a lever! Miss Kat loved it. It looks like it going to be a very fun place, we will check it out on a day we get out earlier. The best part is that it is free! (A good tip for those of you headed to JTC in the future!)

In class today we had another session with audiologists. We went over the types of hearing tests and what they show and who they work for. The most interesting point they made was that booth testing is the gold standard NOT ABR's. They said that reading an ABR is subjective so it should only be used as a tool but that NO ONE should be getting hearing aids programmed or a CI based on the results of an ABR. They said that there are many ways to get accurate booth tests on children of any age or developmental level and that they are the best way to go.
Our last class of the day was about assessments. We went over the importance of both informal and formal language assessments. The SLT said that while formal assessments are key, information gathering and the lists that parents do everyday are just as important, if not more so. She said that teachers only see a sliver of our child's language and that they must rely on us to give the full picture of what our kids can do. While it is very important to know exactly where our kids are at that moment (and that is what the formal assessments do), it is also important to know how much progress they are making and where they are headed. It is through observation that we are able to make the goals that will help our kids progress.

One funny tidbit, Miss Kat was playing in the dorms with some of the kids from school. One of the younger kids wasn't understanding her words (his issue, not hers) so she started signing to him. He still wasn't getting it (of course not!), so she went even s l o w e r. She seemed a little exasperated that he just wasn't understanding. She tried one last time and signed and spoke super clearly “You run. I chase. I'm a monster. Ready??? Go!” Nope, nothing.....Miss Kat just rolled her eyes.

Miss Kat is exhausted (all the kids are). She is working hard all day long. I am so proud of her. She is amazing.

John Tracy Clinic Summer Session Part Three

6/10/09

Today was another great day of learning.

Our days start in the classroom with our little ones. We spend 45 minutes practicing the things we have been learning and just playing in the classroom. Yesterday we had talked about the power of pausing. By allowing a few seconds, we give the give the kids an opportunity to process what we are saying and give an appropriate response. So, today in class, when we did Ring-Around-the-Rosie, we all paused and waited for the kids…”We all fall…” and Miss Kat said “Down!” Then we do the second verse, “We all stand…” and again I hear Miss Kat’s little voice “Up!” She was the first and only kiddo to get it! Yay, Miss Kat!

The first class for the parents today was on receptive language. We got to hear from a parent with an older child who has already graduated from the John Tracy Clinic years earlier. The two most important points she made was that we need to see our speech as a play by play description of what is happening and what we are doing. The other was that we need to use language from whole to part. Start big and then smaller. Start with big picture and then add details. We also had the chance to watch videos from the children in our group. They showed how the therapists are working with the children and gave us tips about how to keep them interested and motivated.

We talked about a study that was done with some hearing families. The study compared “talkative families” versus the contrary. It said that the talkative families’ vocabulary grew faster and had higher IQs. It also showed that those families spoke 30 million different words in the three years versus only ten million for the non-talkative families. Again, the key to everything is TALK, TALK, TALK.

Our last class was about how we hear. A pair of audiologists went through the ear, piece by piece, and explain how everything works together to let us hear. It was very detailed (who knew the part we normally call “the ear” is named the pina?). I asked a question about conductive loss (since the vast majority of our kids have sensory-neural hearing losses it doesn’t come up a lot). To me, it seems like it would be much easier to deal with. The cochlea and nerves and hair cells are all functioning well, so if you can get the sound to the right place, wouldn’t it “fix” the loss? Now we all know that CIs and hearing aids don’t give our kids normal hearing, they aren’t like glasses for our ears, they just provide access to sound, but if all the other hearing organs are working properly, wouldn’t the sound that gets to the brain be normal? The audiologists said that they can NEVER say that a child with a hearing loss will have normal hearing (and that we should fire ANY audiologist who says that they can), but that a conductive hearing loss is “less complicated” than a sensory-neural loss.

At the end of school, Miss Kat had a speech appointment and I got to go with her. We talked over my concerns about her, her services at home, etc. I told the SLT about my issues with our educational options and my horror with the speech services at school. After we talked for a while, we brought Miss Kat in and we played. The SLT would instruct me on how to interact with Miss Kat and how to elicit the best responses from her. The biggest thing they have been pushing (for me personally) is to expect more from Miss Kat. They said that she is using so many words and combinations that I need to expect her to do it. If she wants a glass of water, don’t give it to her for just voicing “water”, but tell her to say “I want a glass of water” and then wait for her to do it. And she can!

I am also working on speaking closer to her. It really does make a difference. Her pronunciation of words really improves if I am closer to her implant than if I am sitting across the table from her. I never realized that even a few inches could help that much.