Good-bye and welcome back

As some of you may have noticed, I made my blog private for a few days. I have always promised myself that no matter how negative the criticism got, I would leave my blog public, because I believe that it is a source of support for other parents and an opportunity to shed light on CIs, ASL, spoken language and Deaf education. Well, they managed to get me for a few days.

What happened? Well, I post on a certain deaf message board. There are many people there that do not like me, and do not like the choices we have made. They disparage me, my daughter and her progress. They have called me an audist more times than I can remember, and now they have begun to attack me personally, including making claims that I have severe mental health issues. It is disgusting. So, at one point they were attacking me, and trying to use the words from my blog as ammunition. So, I blocked it.

The whole situation makes me sad. These people are supposed to be my daughter's future and community. They are the ones that parents are supposed to turn to for support??? They attack every hearing parent who chooses a CI for their child, and most viciously, those who choose spoken language as well. It is despicable. Rather than encouraging ASL, they attack spoken language. There are individuals who claim that CIs don't work, others who say they "cringe" when they see children with CIs, and nearly all believe that it is appropriate to protest at a child's school......not ok.

All of this reminds me of how grateful I am for MY Deaf community. There are so many individuals who have made our journey amazing. They have been loving, supportive and welcoming. They were there when my daughter was diagnosed. They helped us see that she would be just fine, no matter what language she used. They helped us learn ASL, and gave us a way to communicate with Miss Kat. When we chose to give her a cochlear implant, they supported our choice. They told us that it was our decision, and they said that they knew we had deliberated and that we were making an informed, well thought out decision....and then it was not discussed again. When we decided to move Miss Kat to a spoken language program, they said that it was her decision, and that as long as we continued to give her language and expose her to the Deaf community, they were ok with that too.

I have always felt that the local Deaf community was a wonderful resource for us. They were kind and loving, open and welcoming. I will never be able to express how much they mean to us. I am also so thankful for Miss Kat's first school. Her bi-bi school taught her so much. They helped give her language, but also gave her a love for school and for learning. While eventually it was no longer an appropriate placement for her, that doesn't mean that it isn't great for other Deaf kids, or that the people who work there are not amazing, dedicated, wonderful people. While we may disagree on some things, I respect and love you all.

While we pack up a few last things, I would like to implore the online Deaf community (and those who choose to behave this way off-line as well) one last time. Please stop attacking. Parents aren't the enemy, even those who choose spoken language. Children with implants, even those who choose to listen and speak, and those who do NOT ever learn ASL, are still deaf. They are just deaf in another way. There are millions of Deaf and deaf people, and each and everyone is deaf in a different way.....and that is beautiful. There are successful ASL Deaf people, successful oral deaf people, successful Cuers and successful CI users.....and there are even successful people who do ALL of those things.

Don't tell parents that CIs don't work, that their child will never listen and speak, that isn't true, and they can see, everyday, in their own home, that it isn't. Instead of attacking spoken language, and telling them that their child will suffer and be damaged from CIs, tell them about what ASL can ADD to their lives. Talk about how wonderful, loving and inviting the Deaf community is, and how great it will be for their child to have EXTRA support, not that their child will grow up to hate them and reject them for choosing an implant.

I don't know, maybe I am a fool, but I want to build bridges. I want my child to listen and speak AND be Deaf. I don't want people to think that her CI is a failure because she chooses to sign. It just isn't true. But I also don't want people to think that just because she hears very well that she has become "hearing", she hasn't. She is Deaf, and always will be.

So, here we are. Perhaps I will be attacked again, for thinking that *I* (a hearing person) can give the Deaf community advice.....or maybe, somewhere, someone, will read my words, and take a tiny step towards the parents....volunteer to help out at a oral school, go to a meeting of a parents group, meet teenage oral/CI kids (and see how well they are doing), or that's too much, just be nice! Smile, nod and hug a parent or kid who needs your support!

Onward and eastward

This post has been a long time in planning, but I am finally prepared to announce our plan. As of December 29th, we will be moving. We are done dealing with Miss Kat's school, and their low expectations. There is a fight here that needs to happen, to change the education of deaf children in Utah, but Miss Kat's education can not come second. Perhaps, someday, when she is grown and fighting her own battles, I can return, and help change things for the next generation. But, right now, her needs must come first. We look forward to the opportunity to work with truly skilled and dedicated professionals in an environment that will allow Miss Kat to thrive.

As we are leaving, I would like to thank a few people who really have been amazing in our lives. These professionals have been amazing, and have been a great support to Miss Kat.

Miss Aimee- What can I possibly say about you? I believe you are the single best Teacher of the Deaf working today. You helped Miss Kat develop a love of learning that will take her far in life. You are amazing, and we are thankful for everything you have done for Miss Kat and all the Deaf children and their families you have worked with. Thank you again.

Cache- I could not respect you more. I believe you are a true professional with a real passion. I am so thankful that you went to the mat for us and helped Miss Kat get her implants. I know that without you, she would not be where she is today. Thank you for your dedication and skill. (We are terrified that we will never find someone who can match up to you!)

Susan- You have been with us, right from the start! You have helped us on every step of this journey. You supported us when we chose ASL and then when Miss Kat's spoken language exploded, you helped us encourage that as well. If we had more professionals like you....the world would be so different.

Thank you so much to these people, you have made a difference in my child's life, and the lives of so many other deaf children. I wish you nothing but the best for the future.

So, we packing, and getting ready. Miss Kat is excited, and we are prepared to start the next part of this journey.

"Why do you have that?"

Today at (Mc)"Donald's" we had a great experience. Miss Kat was playing and she would ask the other girls "Want to play with me?". It was adorable. (And they all did want to play with her, how could you not?). But, anyway, she had been playing with a little girl for about a half an hour when she ran over to me and said "She wants to know why I have this" and pointed to her implants. So, I asked her, "Why do you have implants? What do they do?" She responded "When it's off, I can't hear, but when it's on, I can hear you." So, I told her, "Go tell her that!", and she did! I saw the little girl's mom smile as Miss Kat clearly explained exactly what she was wondering too.

I was so proud to hear Miss Kat explain her implants and (a tiny bit) her deafness. She was proud and matter of fact, and everything I could have hoped for.

This reminded me of something I saw the other day at school when I was picking her up. She was in gym and it was noisy. They were playing basketball, but then the teacher wanted to switch games. She started giving new instructions and Miss Kat was on the other side of the gym. I watched as Miss Kat walked over to the teacher and naturally positioned herself so she could hear and understand! WOW! She knew what she needed and (without prompting, instruction or anything else) made sure her needs were met! Self advocacy all the way!

I have noticed that Miss Kat REFUSES to not understand. She is unwilling to miss out. If she doesn't hear you, she asks for a repeat. If she doesn't understand, she tells you. If she isn't following a story (usually a movie), she will ask for clarification. I couldn't be more pleased about it! I never want her to accept missing out. She deserves to understand, and she knows it!

2 years ago JTC asked me some questions...

And here is the end product!

It is so interesting to watch, now, after so much time. We were really, just right at the beginning of this section of our journey. I was terrified that we were making the wrong choice by emphasizing spoken language. We were so thrilled with her progress (which in retrospect was sooooo little!) but also so worried about the gap that she needs to close (ok, so that part hasn't gone away yet!)

So, anyway, thanks again JTC! You helped us so much, and we are proud to help you spread the word too!

Wrong again jerkoff

A received this comment today, and I would like to address it:

"So you're annoyed with the Deaf Community's warning you that Miss Kat's screaming and resistance to her newly turned-up Advanced Bionics failing-hot implant is a sign that you are forcing her to do things your way rather than doing what is genuinely in her best interest. That your dreams were guiding what should have been more rational decision making.
Now you find out that her implant really WAS causing her to scream because it had failed hot, and that Miss Kat was trying to tell you, but you wouldn't listen.
It's not too late to admit that you were wrong, and that Miss Kat was herself trying to tell you a Deaf Truth... That hearing people want hearing so badly that they will force deaf people to pretend that the interventions are "not that bad" when they ARE every bit that bad; that they are just endured out of love, and faith that a parent would not do something to hurt their child.
But these 2 posts seem to show you busily burning the bridges to the Deaf community over what turned out to be your own mistaken decision.
Or are you hoping just to quietly reimplant her before anybody notices that your decision to continue to force Miss Kat to endure the effects of a bad implant caused your daughter unnecessary pain and suffering to which YOU were far too long DEAF, because you chose to believe the medicos over your own daughter's cries for help.
Maybe time to LISTEN when Deaf people try to warn you? Even if they do not articulate their warning to your liking, perhaps TRY to understand that they are not only trying to HELP your daughter, but that they are too often RIGHT.
- AndyJ"


I'll be perfectly clear. My daughter's implant DID NOT FAIL. In fact, she just had her 3 month post MAP appointment on Monday and she is doing wonderfully. In fact, she had some speech discrimination testing done, with just her NEW CI and she scored:

WIPI- 21 of 25
MLNT- 54 of 59 phonemes and a word score of 11 of 12

Yeah, AB had a recall. That sucks. But my daughter is great than 90 days post and not affected. It is ridiculous for you to accuse me of hiding this. You are a straight up asshole. I'm not going to mince words. You actually believe you know better than I do. Well guess what, WRONG AGAIN. You sir, are the reason people make their blogs private. But, I won't. Up yours and the horse you rode in on.

Big changes under way

There are some very important decisions being made around here. Stay tuned (check back after Thanksgiving) and I will keep you updated!

Myths and Misunderstandings? (Part 2)

As I said in my previous post, as Miss Kat aged, we had some struggles. As I have talked about before, she eventually lost more hearing and we decided to look into a cochlear implant for her. As part of that process we were introduced to whole new groups of people.

When we first discovered Miss Kat's hearing loss, I read A LOT of books. I read several by Harlan Lane (including Mask of Benevolence in which he claims that no child has ever learned spoken language through cochlear implants ) and I read one called "Deaf Like Me". It was another story of how oralism fails so many children (I actually like the book, but it is very outdated) but the parents mention that they have a correspondence course for parents of deaf children, to help teach them spoken language. I figured it wouldn't hurt to look into the program....that was my first contact in the "oral world", the John Tracy Clinic.

After Miss Kat's first cochlear implant was activated we took the opportunity to go to California and participate in the John Tracy Clinic's 3 week summer session. The JTC summer session is unique because while they work with the children in the preschool classrooms, the parents also have classes. JTC believes that parents are the first and most important teachers of deaf children. They teach parents how to teach their children. In a few short weeks we learned about audiology, the acoustics of speech, language development, cognition, literacy and so much more. It was an amazing experience that I would encourage ANY parent of a deaf child to seek out (oh, and did I mention, it is free?!?)

So, while I was at JTC, I had my first interactions with real, live, oral parents and their children. They parents were amazing! They were active, involved, and extremely well informed. They weren't lazy or ignorant. They were seeking what they believed to be the best course of action for their child and that was spoken language. And you know what, it was working! Their children were thriving! These weren't kids with no language, they were laughing and telling stories and they could understand what their parents were saying. JTC also arranged panels for us. They had both a teen and adult panel. They had 15 or so former JTC students come and talk to us. It was very enlightening. These were oral deaf teens and adults. They were happy with oralism and the choices their parents had made for them. They were here, advocating for spoken language for a whole new generation of deaf kids......but I thought that didn't happen......

At JTC I even met a deaf teacher of the deaf. She was deaf and was raised orally, but as an adult learned ASL. She still advocates for listening and spoken language. She works everyday to help parents teach their children spoken language. Then I looked around even further. I started meeting Deaf parents who implanted their children and sent them to oral schools. My whole perspective started to change. These weren't lazy or evil people, they wanted the very best for deaf children. They want early, fluent language. They want the kids to excel and read well and achieve their dreams. They just happen to think that it is best accomplished a different way.

I forayed into an AG Bell conference locally. I was TERRIFIED to go. I thought that we would be looked down on for signing, or that people would judge us, think we were lazy (hmmm, isn't this all the things *I* was doing to the oral parents?) or whatever. So, I sat down and learned....I learned a lot! The first thing I noticed was that NO ONE was advocating against ASL. They didn't say or even imply that ASL was a bad choice, that just isn't where their expertise lies. They were simply advocating and teaching about one area, spoken language.

So now I was very confused. I was seeing what I had once considered impossible. I was seeing happy, healthy, thriving deaf children and adults who choose to be oral. They have great language, they read well, the go to college, and then, as adults, they advocate FOR oralism....

Over the next year, Miss Kat's spoken language blossomed. Her spoken language soon outstripped her signing. She began to drop signing, even though we continued to sign with her and expose her to the Deaf community through events, her friends, and our weekly church services. There are definitely times where she struggles and needs clarification through ASL, but there are other times when she glares at us when we sign and says "I know, I heard you!". I would say that ASL is no longer her primary language. She actually prefers to speak, and we were told this was impossible. (And there will still be people who comment on this blog saying that it is because we put too much emphasis on spoken language and she is just trying to please us, but we, and anyone who meets her, knows better).

So, where does that leave us?

Myths and Misunderstandings? (Part 1)

When Miss Kat was diagnosed with a hearing loss, we immediately sought out the Deaf community and asked for their experiences. We asked what their parents did with them, how it worked, and what they would choose for their own children. We heard the same story, over and over. They were raised orally, with varying degrees of success, then, as teens or adults, they discovered ASL and it changed their life. Communication became an ease, they discovered people who understood them, they were reborn.

We also asked them what they thought of oralism and cochlear implants. They told me that lazy parents chose CI's. They want to fix their kids. They don't accept them as Deaf. We were patted on the back, told that we were special, we were the only parents who "got it". Our daughter would turn out healthy and whole. She would read well, and never struggle. She would never have language delays, because we gave her ASL. They also promised that she would gain spoken language just as easily as oral kids. They told us that ASL NEVER hinders a child's spoken language and that she would pick it up.

We ate up the things we were told! We met a lot of kids in the beginning, through our early intervention and Parent Infant Program. We were the only family that did voice off ASL. The vast majority did a sort of TC approach. They would sign and talk, sometimes at the same time, sometime one then the other, sometimes focus completely on one of the languages. Then there were the "oral kids". I always felt so bad for these kids. I "knew" that they were destined to fail. I judged their parents. Why didn't they "get it"??? Why didn't they want their child to have language??? Why were they forcing them to struggle?? Didn't they understand that their kid NEEDED ASL? That they couldn't possibly learn spoken language fluently! Why didn't they just learn ASL and save their children years of pain? ALL deaf kids grew up and joined the Deaf community, why didn't accept that??

Then some time started to pass....I started noticing that their kids were doing great! They were learning and communicating and were happy. They were doing great in school and they weren't behind. I met kids with CI's who were doing AMAZING! They could speak and understand everything I said, and they certainly weren't struggling. They could hear. They were deaf, but they heard even quiet whispers. I thought maybe they were the exception....I had been told that these things were impossible. CI's were invasive, and they provided very little benefit. They were huge gambles that rarely ever work better than hearing aids.

In the meantime, we continued to use ASL. Miss Kat was doing well. We spent thousands of dollars and hours learning ASL. We were learning as fast as we could, but it still took time. We signed all the time. We encouraged our family to take classes at the Deaf community center. We invited them to community and school activities. Some came, some tried. The rest didn't. We were frustrated and angry. If they really loved Miss Kat, they would learn her language. We started to pull away, she was becoming isolated from her extended family. They didn't understand much of what she said, and she certainly didn't understand them. We spent most of our time acting as interpreters for her.

At the same time, she was not learning spoken language. In 5 years, she made no progress at all. Every year at her IEP we discussed how she failed to meet her spoken language and speech goals. She couldn't understand more than a handful of words. No one understood the things she said. When we were in public we translated for her at all times. We helped her learn to navigate without being able to use a shared language, and she was fairly independent, but other kids were starting to shy away from her, adults too.

Also, at school there were more complications. Miss Kat was smart and doing very well, but she did have delays. The school kept saying "It's just because you are hearing" and "She'll eventually catch up". Also, every time we discussed reading, all they would say was "She'll learn". When we pressed them on how, there were very few answers, but a lot of emphasis on memorization. (Miss Kat struggles with memorization as part of the effects of her birth experience.)

We were becoming disheartened. This wasn't how this was supposed to turn out! We were doing all the "right" things. They promised us that she would excel, promised that she would be bilingual....what was going on?

"Raised oral"

There is something I would like to discuss. I hear the term "raised oral" or "raised orally" thrown around a lot. And, I believe, most of the time, incorrectly. As a parent who is currently using the auditory oral methodology to teach her child spoken language, I would like to clear some things up.

Oral is NOT:

• Throwing hearing aids on a child and expecting them to be hearing.
• Putting a child in a mainstream school and expecting them to lipread all day.
• Doing nothing.

 Oral IS:

• Always managing amplification and insuring the best possible hearing.
• Actively teaching a child to learn to listen and understand the things they are hearing.
• Always monitoring all aspects of the child's language (receptive language, expressive language, auditory skills, and articulation) AND overall development, including social and emotional well being.
• Insuring that the child is always making adequate progress in all the areas of language (adequate being GREATER than one year's progress in one year)
• Always insuring that the child has access to well trained professionals in speech, language, education and audiology.
• Insuring that the child has access to and immersion in fluent, colorful, expressive spoken language.
• Insuring that the child has access to role models and peers that share their language.  

I made that list up, off the top of my head just now, I am sure their are plenty of things I missed! But my point is, that if a parent is allowing their child to carry a 5 year language delay, they are not "raising them oral", they are DOING NOTHING! If a parent gets the child hearing aids, and then does nothing, they are NOT "raising them orally", they are DOING NOTHING! Those are irresponsible parents, not oral parents. There is a huge difference.

People have asked me why I am ok with parents choosing oral only. And while I do advocate for both, it is true that I support parents who choose to do listening and spoken language only. The reason? Because it can be amazingly successful. I have seen many dedicated parents with children who grow up happy and do wonderfully. Why? Because they actually DO raise their child orally.

So, I'm asking, please do not lump irresponsibility in with oralism. They aren't even close to the same thing.

Chicken or the egg

I want to share a story I have been thinking about and ask for your opinions.

I know a little girl. She was born profoundly deaf. She was implanted with a cochlear implant at 18 months old. Her family chose to sign with her. She entered a voice-off ASL program at age 3. The program has no auditory therapy or support. She has spent 6 1/2 hours a day, 5 days a week in a voice off ASL environment. Her family also uses ASL as the mode of communication with her at home. She wears her implant *most* of the time, but certainly not all. She gets MAPing but not therapy.

This little girl is the ONLY child implanted in early childhood who I have ever met who could not understand spoken language through listening. So, here's what I'm wondering: Does she not understand spoken language because she exclusively uses ASL or does she use ASL because she couldn't understand spoken language??

A few cute things

This morning I was laying in bed (wishing that the creaking in Miss Kat's bed would stop and she would go back to sleep, but no dice!) and Miss Kat climbed out of her bed and made her way to the bathroom. I heard the door shut and then a minute later "Help! Help! The door is locked!". I run to the bathroom and it isn't locked, just stuck, so I let her out. She thanked me and went back to her room. It was sooooo cute to hear her call for help!

Also this week Miss Kat asked to get "french fries from Donalds" Woo Hoo! We went straight there! Also, this week at school it is "Spirit Week". Each day has a different theme and the kids are supposed to dress to theme. For example, Thursday was crazy hat day, Tuesday was backwards day, etc. So, Friday was supposed to be blue and white day. Well, Miss Kat came home from school Thursday afternoon and informed us that it was not blue and white day but "pajama day". That is impressive not just because of the vocabulary improvement (used to be called "sleep clothes") but also because that would have been said over the speakers and they wouldn'r have sat there and explained it, she would have had to pick it up...not too shabby!

Last night we attended a Deaf community event (one next week too). As soon as we walked in Miss Kat sternly told us (in voice) "No talking!" Well, that didn't last the whole time! While she used ASL with Deaf people, she still prefered to speak to us and hearing people (even though we signed the whole time). For "unknown" persons, she would speak and sign. Miss Kat was amazingly cute last night too. She decided that she was going to help out with one of the games. She would give the kids the tickets that they would earn. She would tell them "You're so beautiful!" (to little girls) or "You're are so strong" (to boys after they played) and everyone got a "Good job!" when she handed them the tickets or "So close!" if they missed. If they missed all the rings, she would say "It's ok, you still get one." I love my monkey so much.

1 month post #2

So, a few things have been going on so I figured it was time for an update.

We had Miss Kat's "one month post" MAPing, and it couldn't have come at a better time! Friday Miss Kat was saying "WHAT?? I can't understand you!" Thank goodness her appointment was on Monday! So, we headed up the two hours to see Miss Kat's audiologist. He had purchased a "Littlest Pet Shop" toy for Miss Kat to use in her conditioned play. She LOVED it!

This was the first appointment in which we MAPed both sides. It didn't work out so good! We did all the MAPing and then went into the booth to check it out. Miss Kat's audiogram was AWFUL! She wasn't hearing better than 35 db anywhere! It was low as 45 db in some frequencies! The audiologist worked nearly another two hours to get her levels where they should be. By the end Miss Kat was exhausted, but she was such a trooper. She worked so hard. So, when we walked out the door, we hoped that she was just tired and that after a few days, her levels would be where they should be.

So, a few days later, I asked her Aural Rehab therapist to put her in the booth and see how her hearing looked. It was still bad. The crazy thing was that it was her old ear that was struggling so much! It would be understandable if she hadn't adjusted to her new ear and it wasn't hearing well yet, but this is her old ear, she hears great with it! Well, the booth testing was still a mess. She wasn't hearing the Ling sounds any softer than 35 db....unacceptable!!

So, two days later we headed back up to the audiologist to try again. This time she was totally cooperative (again! what a sweetheart!) and she was reMAPed. We went in the booth and had the same issues. Argh! The biggest problem was that she was confusing "ooo" and "eee"....weird right? So, we looked it up and they do share some formants. They are differentiated at 1000 hz, so the audiologist worked his magic and fixed it. So, back into the booth...and again, she isn't hearing the tones well. So we switch to speech. Success!!!! Miss Kat was hearing the Ling sounds just fine and was able to discriminate speech as quietly as 10 db!

10 db is so much better than 40!!!! I love our audiologist. He is patient, good at his job and he REALLY cares about the kids. So, THANKS CACHE!! He got us back in in 2 days and spent a total of 6 hours making sure Miss Kat could hear! (Audiologists only care about the money my ASS)

Improvements

I have noticed some very drastic improvements in Miss Kat's speech and spoken language in the last two weeks. She is doing great with adding the final consonants (she has always been a deleter, and it really lowers her intelligibility) and she is now adding "s" for plurals! Yeah Miss Kat! (Just a note, these were actually CID's biggest concerns. They thought if we fixed those two things Miss Kat would be come infinitely more understandable.)


So, what is the mysterious explanation for such great results in such a short amount of time? Well, I have a few theories:

First, Miss Kat did have her bilateral implant activated. It correlates with the exact time frame of these improvements.

Second, she is back in school. The difference could be because she is back in school full time.

And last, and what I think the answer truly is (though I am sure the other things helped), Miss Kat has a new speech therapist at school! As I have posted in the past, we have had some struggles with the speech therapist (read: I despise the old therapist!) I had declined speech therapy for Miss Kat last year because I believe that the former therapist is not qualified to work with Miss Kat (in fact, I had nightmares, actual nightmares about her). But this year we have a GREAT therapist! We have actually have worked with her in the past. She was a graduate student at the University where Miss Kat gets her aural rehab. So, we know that she works well with Miss Kat, I know that she is good at her job and I know who trained her and I trust her COMPLETELY!

I am very excited about Miss Kat's progress and her new therapist! Woo Hoo!

And now, a week later...

When I last blogged, I was very honest about Miss Kat's reaction to her second implant activation. I was really surprised at the reaction....actually, a better word would be disappointed. I am not really surprised by the online Deaf community anymore. I have had VERY nasty comments, accusations of child abuse, blah blah blah, and because I "showed weakness" it happened again. I wanted to be honest about my daughter's experiences with her cochlear implants, and just her life as a Deaf child, but some people see my honesty as an opportunity to attack and smear cochlear implants....C'est la vie as a hearing parent of an implanted child I suppose.

So, I wanted to update everyone who cares about Miss Kat. She is doing great now! She doesn't mind her second implant anymore. She hasn't struggled putting it on for at least a week now and she doesn't say it is loud at all. She is starting to be able to discriminate simple words with it and no longer hears the "beeping".

It was a struggle in the beginning, but honestly, it was a HUGE life event for her. She can now hear in her other ear! She had surgery and activation and now has hearing in an ear that didn't before! It's kind of a big deal! I think sometimes we forget what an impact that would have in a person's life, we (as parents) are so excited about activation and hearing that we forget what a change it is for the child, and we need to remember to be extra patient and gentle through the transition.

Miss Kat is tired a lot, listening with her new ear is a lot of work! I am glad it is still early in the school year, so there isn't a ton of work and we can focus on catching her ear up and therapy, and not fall behind in homework and stuff. She is doing great!

So, I want to say to other parents, keep going, it get better, it's worth it! You chose a CI for your child for reasons, you want them to have the opportunity to hear. There will be struggles, there will be bad days, but the good days will outweigh them. I would like to say to the doubters...I told you so :) She is happy, healthy and likes her CI and it took all of a week.

An explanation

I want to clarify some issues that could arise about my last two posts. If you aren't familiar with CI's you could misunderstand.

First, Miss Kat WANTED her second CI. She has been begging for it for almost a year. She has been excited and looking forward to it for a long time.

Second, when a person is newly implanted it sounds weird. As your brain adjusts, the sound gets better. The first time Miss Kat put her new implant on all she could hear was beeping. She found it frustrating because she is used to a better quality signal, her OLD implant. Just in the last 5 days she has improved from hearing only beeps to being able to recognize a few simple words. She is frustrated because she wants to hear well, right now, and she is disappointed.

Third, everything seems loud to her right now. Objectively, it isn't. Her MAP is set waaaaaayyyyy lower on her new side vs the old side, but because that nerve hasn't had good stimulation for some time, it feels loud to her. The longer she uses the implant, the better the nerve and her brain will be at interpreting the signal, the more normal things will loud.

Last, pain....she isn't in pain. The shock of putting her CI on first thing in the morning isn't painful exactly...I have heard CI users compare it to walking from a dark room into florescent lights. It is shocking, and uncomfortable, but only lasts a minute. When she was first activated with the old CI, she was uncomfortable first thing in the morning as well, but it went away within a week or so. We expect that will happen again this time.

Once her CI is on, she wears it just fine. She doesn't take it off, and it doesn't bother her (except when she wear it alone, but that is because she can't understand speech with it yet, and she finds that annoying.)

Miss Kat needs to wear her CI to get it to work. The more she wears it, the better it will become, and the more she will like it. It doesn't happen overnight. It took nearly 2 years for her to get to the place she is with her first CI, and it will take that long this time as well.

I understand that not all of the readers of my blog are familiar with these aspects of cochlear implants, so I thought I would explain things so they would be clearer. I thought it was important to be honest, so that other families would know that things aren't always perfect, but that even in the dark moments, things will get better. If you have a question, ask it in the comments and I will make sure to answer.

The next few days

When I started this blog, I promised myself I would be honest about both the good and the bad times. This blog is about some of the bad times. I would appreciate support rather criticism.

So, where we last left off, Miss Kat has had her second CI activated and she HATES it, and doesn't want to have anything to do with it.

So, Thursday morning we wake up and start getting Miss Kat ready for school. We've explained  to her that the longer she wears her implant, the better it will get. Also, her Nana promised her that if she wore her CI, she would take her to the mall to "Build A Bear" and let her pick out some clothes for her Zhu-Zhu pet. So, she wore it all day, and let us turn it up a tiny bit. But, after her shower, she AGAIN, flatly refused to put it back on. We fought, and eventually, she put it back on, but cried the entire rest of the night. Thursday night, she fell asleep with it on. (Which we liked, because then she is getting stimulation but not having to listen to the "beep beep")

When Miss Kat woke up Friday morning, she was MAD that her implant had come off during the night. (She had slept in our bed, so it stayed on for around two hours, but when she started rolling around too much, we just took it off.) She cried and told us that she had left it on so that when she woke up she wouldn't have to have that "reconnecting" moment in the morning. We felt terrible for her. Poor baby, she is trying so hard to get it to work for her...

So, Friday morning we all get up and start getting for school and work...and everything fell about. Miss Kat starting screaming again. She wouldn't put her CI, she was crying and shaking and SCREAMING at the top of her lungs. We tried reasoning, tried bribing, tried yelling, even tried forcing...it all fell apart.Miss Kat missed her bus, we all just lost it. We all cried and hugged and talked and hugged more.

We kept Miss Kat home from school Friday. She stayed home with Daddy and did a little of her summer work and just concentrated on being ok. We were extra gentle with her and let her just relax. She was even willing to watch a movie with just the second side on. I think she just needed a rest.

So, that brings us to the week-end. She has been feeling a lot better. She still struggles a little first thing in the morning, but it isn't really bad. (She was uncomfortable for the first two weeks or so with the first implant too.) We bought her a Hello Kitty backpack to bribe her into "putting it on in the morning without a fight" for two weeks.

Things are looking better, but for a few days things were very dark. We experienced a very trying time, and were very frustrated and scared. We are all still recovering and we have high hopes that things will continue to get better.

Activation #2

I waited awhile to post this because I wasn't sure where we were going to end up. Things didn't go the way we assumed they were, so we didn't know how this post would end, so I waited...but I feel ready now, so here we go!

Wednesday morning we picked Miss Kat up from school and took off on the two hour drive to her audiologist. We were all very excited, especially Miss Kat (because she gets to go to the local creamery and get homemade ice cream after audiology appointments).

So, we hooked her up, did the NRI's, set the T and M levels and got a nice MAP all set up. Then the audiologist lowered the volume and set three MAPs for us to slowly work up through. Then he turned the mic on to "go live".....and all hell broke loose! Miss Kat ripped the CI off her ear and SCREAMED. Ok, that happens sometimes, he turned the volume all the way down and we had her put it back on. When she put it back on, she was ok with it, but she didn't let him turn it up anymore.

So, we took it off, and the audiologist programmed it and the back up and handed it back to us. Miss Kat REFUSED to put it back on. She screamed and cried and even hit us! Wow, we were NOT prepared for this...(her first activation went really well and she liked her CI, right from that first day). So, we argued, and pushed, and bribed and scolded...and nothing worked. She would start to put it on and then FREAK OUT and refuse.

It was  insane! She already has one CI, it works great, and she has been using a hearing aid in that ear nearly her entire life! How different must the signals be to her! So, eventually, after about 15 minutes we scoop up all our stuff and leave the audiologist's office. His job was done, there was no reason for him to stick around.

So, we go out into the hall and lobby and argue and fight and bribe some more. Eventually, she puts the implant on, sobbing. She tell me that she "can't hear" with it, and it's "beeping". We promise her that if it still hurts after 5 minutes, she can take it back off. But she leaves it on while we head over to get some ice cream. After 8 minutes she says "I can hear with (this) ear!". Oh good, maybe things are improving!

On the way home we stopped at a playplace so Miss Kat could get french fries (one of our bribes) and to avoid rush hour traffic on the way home. She was awful the entire time. She was mad and complained that it was too loud in there, and even took the implant off while we were there. It was a fiasco.

As we were leaving we offered to rent her a Red-box movie for the rest of the drive home. She picked one out, but as soon as we tried talking to her again, she started SCREAMING and throwing another fit. She starting crying and complaining about the "beeping" again. I called her name, she ignored me, again and again and again. I got super frustrated, and tapped her...turns out her other battery had died and she had just been using the new implant for awhile...argh. I felt terrible.

So, we put on her spare battery and headed home EXHAUSTED. We were completely unable to turn the volume of the programs up at all. We struggled getting her to go to bed, it was all around a DISASTER, and we knew, in the morning, we would face the exact same thing again...

Funny story from last week

So, we went to a birthday party for one of Miss Kat's friends last night. My husband and I were the only hearing people at the party. There had been some kind of mix up with the reservation (we were at a Chucky Cheese type business) and they were writing back and forth, trying to figure it out. At the same time the employee said "Wait a minute, we have someone who signs..." and goes off to find that person. (We all, of course, roll our eyes because that means that someone here once learned how to fingerspell from Sesame Street) So, the mom said again, "No, let's just write and finish this".

So, we finally get everything settled and into our party room. They write on the wipe board "If you need anything, let us know". So, the party goes on, and the board works well, they get soda and pizza, kids are having a good time. About an hour later, the party host figures out I can hear She walks up to me and says "Can you ask them if they want the pizza boxed up?" and I say back "Yeah, you can write that and she'll answer you." The party host looked dumbfounded, but wrote it on the board.

The mom and I just laughed! I am sure the poor 15 year old has no idea why I wouldn't speak and make this easier for her, but if the mom had wanted me to interpret, she would have asked me (she has in the past) and really, she grew up totally oral, so if she had wanted to speak, she would have done it herself!

Post-op #2

Miss Kat had her post op yesterday. It is the last step before activation!! The surgeon just wants to take a look at the incision, make sure everything is healing well before he gives the OK for activation.

(I was not at the appointment, so the entirety of this post is from the report of Hubby)

The first person that came to see Miss Kat was the surgeon's medical assistant. She asked how Miss Kat's recovery went and took a look at the healed incision. She noticed that there was a little stitch still there. It had been covered by a little scab, so it never healed. The assistant wanted to just remove the stitch (should just take a sec), so we told Miss Kat and all hell broke lose! She was pretty sure that she would die from the removal...slowly and painfully! (I didn't write about it, but we had a HUGE struggle getting the steri-strips off as well. They were supposed to come off themselves after a week, and that just didn't happen, so eventually (after more than two weeks) we had to take them off, and Miss Kat FREAKED out!)

So, Miss Kat tries to be brave and let her remove the stitch, but she was genuinely scared, so no progress is made. Miss Kat tries to sit and let her do it, but every time the assistant even comes close to touching her, she pulls away and cries. Then Daddy sits and tries to hold her head to let them get the stitch out....and that doesn't work either. The assistant leaves and gets another nurse and the three of them try to hold Miss Kat down and get the stitch out (just a note, if I had been there, this would have never gotten this far, NO ONE holds my kid down unless there is a serious issue...I think this could have been handled better). They fail....so they give up and say screw it, let the doctor do it!

So, then the surgeon (eventually) comes in. He walks in and says "Heard there was some trouble". He says that he thinks the stitch will come out on it's own and not to worry about it! Argh...So, he takes a peek at Miss Kat's ear and everything looked great. He gives us the go ahead for activation and he hopes to never see us again!

So, we have the new processors, the batteries are charging, and we are headed up on Wednesday! Bionic Miss Kat will hear in stereo!

A.......meeting

We had a meeting yesterday. It wasn't an official IEP meeting (because we wrote an IEP in Feb. so it isn't due for a long time) but I wanted to share Miss Kat's test results and meet the staff she will be working with (her school is under going MAJOR changes, including a major overhaul of staff). I met the new director of the oral program as well as Miss Kat's new teacher. 

This year Miss Kat's deaf class will only have 4 kids, so the school decided to combine the first and second grades together. I am less than pleased about that. I am wondering how the teacher will be able to teach both curriculum as well as provide an acoustically reasonable classroom (ie how will the kids be able to hear if there are two classes going on at the same time). I HATE group work for Miss Kat, she really struggles to hear when there is that much noise....but hopefully the second CI will help.

We also discussed therapy. Miss Kat will be receiving AV therapy everyday for 30 minutes as well as parent child therapy (with me) once a week. That is great news, because normally the school stops parent child therapy after first grade (though I don't understand why, it can only be helpful).

I have big worries about this year, but I continue to be hopeful. I think we have pretty good goals written, and good therapy set up (both in school and out), so I hope Miss Kat will continue to make great progress (but if not, I will not hesitate to pull her out and homeschool!)

MAPing

While we were at CID we had their audiologists take a peek at Miss Kat's MAP. They thought that she needed a tune-up, so they got to work. They changed Miss Kat's program from Hi-Res P to Hi-Res S (moving from paired to sequential). When I asked them why they used Hi-Res S instead of P, they said "Because it seems to work for the kids"....that isn't very specific....so, I asked Miss Kat's regular audiologist why he chooses to use P and he told me that the research shows that adults prefer P and since kids can't express which sounds better, he tries to MAP them with the specifications that adults prefer. (AB users, what are you, or your child using? And why?)

So...we switched Miss Kat to CID's MAP and waited...she HATED it! She wasn't able to express "This MAP sounds weird", but I got a whole lot of "WHAT YOU SAY?!?!" and "I don't know what you saying", and had some behavioral issues, and ended up crying really hard the one night. So, we had to switch back to her old MAP. (Also, our audi was so curious about the S vs P that he had an adult AB user come in and after he finished his MAP he switched the program from P to S and asked the user what they thought. He said that they reported that the sound quality was much poorer and said it "sounded gravely"...just food for thought....but actually, how cool is our audi to do that?!? He really wanted to know which sounded better so he could program Miss Kat as well as possible. He is the best!)

That was the last few days at CID, and now tomorrow we are headed to the audi for a tune up. I've been trying to take notes on what Miss Kat is, and isn't hearing. She is struggling a little with hearing "S" at the end of words (plurals) and she can tell I am making a sound for "f" and "th", but she just blows air out of her nose when asked to make the sound. We are going to get her hearing the best she can since she doesn't have her hearing aid, and there is still two weeks until activation...(soooooo counting down!)

Overall, Miss Kat is doing great. She is happy and healthy and just having a great summer!

Surgery #2

Miss Kat went bilateral today! Everything went very smoothly. We were at the hospital at 7am for a surgery start time of 8:30. They got us back within 10 minutes of our arrival. Miss Kat watched Spongebob and cuddled up with her Hello Kitty pillow, doll, blanket, nightgown and even shoes. By 8am the pre-op area was swarming with doctors and anesthesia came and gave Miss Kat her Versed (God bless this miracle drug!) and talked over the plan with us. Last time Miss Kat's face was super itchy from the narcotics when she woke up and the nice anesthesia man wanted to avoid this, so he drugged her completely through her IV, (and he totally succeeded!) At 8:32 they wheeled Miss Kat back into the operating room and Daddy, Grammy and I went to wait.

The surgery was scheduled to be finished at 10:45 but at 10:15 the surgeon called and let us know that everything went beautifully. The electrode was fully inserted, no complications and he didn't even need to remove the middle ear bone that he needed to last time. (Which wasn't a huge concern, I figure if he needed the space, TAKE IT, better that than having a facial nerve injury! But at least now she can take advantage of an future technology in that ear.) Everything went very well.

I was allowed to go back into the PACU (which they don't generally allow, but I played the ASL card, and they let me in!) And was there for Miss Kat waking up. It was much gentler this time, and she was less upset, but she was still pretty mad. She was upset that she couldn't lay on her ear, and she let me know that she thought Daddy should have been the one to come back, and that she wanted her scrub hat. (They let her pick a really cute hat in pre-op and promised she could take it home, and she was pretty indignant when she thought she didn't have it.)

After about a half an hour we went to her recovery room and Grammy and Daddy joined us. The nurse asked if she wanted a Popsicle or a soda and she turned to me and asked if she could have both, and I told her "Of course!". So, we watched a little more tv, and Miss Kat ate two Popsicles. Just as we were preparing for her discharge, Miss Kat got really nauseous and threw everything up....exactly like last time (on the way out the door). But, after that she felt much better and we headed home.

At home she got sick again, but after that she ate, and felt so much better. We all laid down and took a nice long nap, and when she woke up, Miss Kat was nearly back to 100%. We walked down to Redbox and rented a movie, headed to get some french fries and now we are sitting down to watch our movie.

It has been a long tough day for Miss Kat, and this morning I was questioning my decision, but really, it could be so much worse! She is up, walking around, playing with her happy meal toy, and in a few week, she'll finally have usable hearing in both ears!

Pre-op #2

We had Miss Kat's pre-op appointment for her left ear, bilateral, surgery. It was a truly ridiculous appointment. We were at the hospital for two full hours! And for what? We filled out some paperwork and made sure Miss Kat didn't have an active ear infection and......nope, that was everything. Grr, we saw the surgeon for a total of 90 seconds (seriously, not exaggerating here). In those 90 seconds he did say that he would try to make the implants line up, but that it is harder than it seems because when he is inserting the second implant, Miss Kat will be laying on her other ear....well, duh, how come that very reasonable fact never crossed my mind?

Things to do in St. Louis!

Well, our time here at CID is coming to a close. We get our car and head home on Thursday. It has been a great experience, and I am so thankful that we had the opportunity to do it. I want to again thank CID for their scholarship, and thank the wonderful donors who make it possible for CID to never turn away a child because they can not pay. I would like to thank Haven House as well. If they hadn't been here for us, this trip would have been impossible. They provided an inexpensive place for us to stay, meals, shuttled us to and from CID everyday, and even helped with the point of today's post, helped us find fun things to do on the week-ends!

CID is taking Miss Kat in filed trips every afternoon, and they are going to a lot of fun places. They went to the fire station, bowling, swimming, toured a grocery store and Cabella's, they went to Coldstone and made their own ice cream, lots of stuff! And on the week-ends we ventured out to have fun of our own!

So, if you are ever in St. Louis, don't miss:

The Science Center (It was a ton of fun, and we spent all day there...Oh, and it's free!)
The Magic House (It is a huge children's museum with 4 floors of stuff to do. It has a construction site, a math floor, and even a section about detective work. WARNING- they have a Van De Graff machine, so keep an eye out if you have a CI user, it's a BIG no-no.)
The Gateway Arch (Of course! They also have a cool museum under the arch. It is about the American frontier and the move westward. In fact, there was an exhibit about the Mormons traveling west...we have the very same exhibit at home, at the other end of the trail!)
The City Museum (Seriously, you HAVE to go here! We have added St. Louis to our list of "must go" action spots because of the City Museum. There are literally no words to describe how cool it is....except maybe 7 STORY SLIDE!!!)
Grant's Farm (This was an amazing trip. It is a little zoo that packs a punch. We were able to see the coolest elephant show ever, and you are up close to every single animal. They even let Miss Kat pet and feed the parrots, baby goats and a camel. It is free, and while it doesn't apply to us, maybe others will care....they also give out free beers to everyone.)

It's been a long 5 weeks, and Thursday I meet with all these wonderful professionals to go oer Miss Kat's testing and goals. I'm glad we came and can't wait to get home!!

Approval for Bilaterals!

We got our insurance approval today, Miss Kat goes bilateral the 28th!!


It's very exciting because we actually had to change insurance companies because the previous plan flatly denied bilaterals! We've only had the new plan since July 1st! It's an awful big expense for the very first week!

We also like that it's only been 19 months since the first so the rehab won't have to too long and the ear should catch up to the first pretty quick. Plus, hopefully she won't end up with a "preferred" ear because it should catch up.

Miss Kat is a little nervous. When we first brought it up she HATED the idea. I asked her some questions and she explained that she had some worries. She told me she was worried it would hurt, I explained that the doctor would give us some medicine to help the pain. Then she asked how she would sleep with two big bandages on her head....I thought about it, and said "No! Your first implant is fine. It is staying the same. You aren't getting 2 implants, you are getting a SECOND implant!" She understood, and now she is excited.

Testing....testing....

CID is really working hard for us! Over the next week or so they are going to be doing comprehensive testing with Miss Kat and write up a big report about her current level, and what kind of program and services she will need for the school year. I am so happy! They will be writing recommendations for the school at home, and helping me to know what appropriate goals would be (something we have always struggled with).

CID will be assess several areas with several different tests. Miss Kat will be taking:

 the Expressive Vocabulary Test for expressive vocabulary

  Peabody Picture vocabulary Test for receptive.

 For speech she will be taking for Articulation  the Goldman Fristoe Test

And for language she will be given a comprehensive expressie and receptive language test called Clinical Evaluation of Language Fundamentals

So, I will return home, armed with this information, and with recommendations for exactly what kind of services and goals Miss Kat will need and how to go about getting them.

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!!!

Tidbits

I have a few things I would like to share with the world, but none of them are pressing or important enough to blog about by themselves, so I'm going to make a jumbled post about all my recent thoughts.

First, I want to declare that I support the California bill, AB 2072. I believe that parents need unbiased information. I think they deserve to be given choices and to decide what will work for their family. For a child to be successful, they need involved, passionate parents. If parents are uninformed or worse, forced to do something they don't believe in, their children will suffer. Personally, I chose to give my daughter ASL. I believe it is the right choice for children with a hearing loss. I think it is fully accessible, right from the start, and that you are gambling if you choose a spoken language only path. From my experience, I believe that there are children who can hear well with amplification, but are unable to access spoken language. It is impossible to know which children will do well with spoken language and which will need ASL. If you give them all ASL, no one loses out.

BUT, that is only my opinion. I have seen passionate Cuers whose children have no language delays and are doing wonderfully. I know some hard-core AV families, and their children are doing beautifully as well. Just because I chose ASL for my family, and I have a strong personal opinion does NOT mean I should get to make the choice for other families.

ANYWAY....I wanted to share a cute story too. Miss Kat was asleep next to me on the couch a few weeks ago. She was rolling around, deep asleep, but trying to get comfortable. All of a sudden we hear, "....dinosaurs...". She was talking in her sleep! It is becoming pretty clear that her "internal voice" in now using spoken English. There have been little sign like that for several months now.

We are also in the process of changing insurance carriers so Miss Kat can get her bilateral CI. People have asked me why we decided to go ahead with the second when Miss Kat has "so much residual hearing" and "still has some speech perception with her hearing aid". To us it wasn't a hard decision. With her CI, Miss Kat has very good open set speech comprehension. In closed set testing she is at 96%. With her hearing aid? Nope. She tests with closed sets at about 20%. In daily life (open set) she is able to lipread a little, but it is as if she is unamplified for speech. So, to me, she has one usable ear, and one useless. Why would we choose to have her stay that way if we have a choice? Why not get both ears up to 96%? Seems simple to us...

Oh, also, Miss Kat started taking Kenpo! She is having a great time. Her teacher uses ASL in class and all the other kids are Deaf too. I'm so happy we found it! We are so lucky that we have an active Deaf community. They really are the best!

So, that's it. Life has been very simple lately. We have a good routine going with school (Miss Kat has gotten 100's on ALL her spelling tests since the first one I blogged about!), therapy, Kenpo, and church. I'm sure once school is out and we head to CID I will have lots to write about!

Our Summer Plans

As I have mention a few times before, this summer Miss Kat and I will be heading to St. Louis to attend Central Institute for the Deaf's summer program. I could not be more excited about it! Last year we attended the John Tracy Clinic and Miss Kat made wonderful progress. I also learned a lot, and was refreshed and ready to use the skills I had learned with Miss Kat all year long. While John Tracy Clinic provides all it's services to families free of charge, CID is a private school and does have tuition. But it is one of CID's goals to be able to provide services to ALL deaf children, regardless of their ability to pay. So, we will be having to travel MANY miles, rent another place to live for 5 weeks, (and all the expenses that come with travel), AND pay the nearly $3000 for tuition. (Oh, and I work for a school and don't get paid for the three months that we aren't in session) BUT, then on Monday the program coordinater called me. The scholarship commitee met and they had awarded us a HUGE scholoarship! We will be paying less than $200 to attend (and that includes all the field trips!)!!!

I am so thankful to CID, it's donors and supporters! They are truly making it possible for Miss Kat to have this opportunity. We really didn't have any idea how we were going to pull the money together to make this trip happen (meaning we were going to beg, borrow and steal to get it!) No one but other parents can understand why it is so important to us to make sure Miss Kat has these educational opportunities and since we are not ready to pick up and leave our familes to change schools, the summer is the only chance we get.

So, again THANK YOU CID!!! You are making a huge difference in another child's life!!!

(If you can help support CID http://www.cid.edu/SupportCID/SupportCID.aspx or The John Tracy Clinic http://www.johntracyclinic.org/supporting-jtc/index.html)

Well, nevermind...

I spoke to our insurance today, and surgery has been postponed. We won't be covered until July 1st, so we had to push back Miss Kat's surgery. We will at CID summer school until July 23rd, so Miss Kat's new implant date is July 28th and activation will (probably, again scheduling issue, we are hoping to move it a little earlier) be August 30th.

I'm pretty disappointed (and I think Miss Kat will be mad about her pillow!) but there is nothing we can do about it. We had the same thing happen with her first CI.  We were postponed at the very last minute last time.

Ugh, this whole process is frustrating, but the benefits are so worth it!

HUGE News!!!

Miss Kat headed to the audiologist today. She hasn't been hearing as well as she should for the last couple of weeks, so her school audi put her in the booth, and the results were not great. She was hearing at 40 db in the lows...YIKES! So, Daddy and she took the long drive and got her tweaked. She is now back to hearing 15-25 db across the board!

While Miss Kat was in the booth they did her auditory discrimination testing and an unaided audiogram for her hearing aid ear. There was good news and bad news. The good news was that she scored 96% on her Nu Chips and Wipi tests. Not too bad! The bad news is that she has lost more hearing in her unimplanted ear. She is no longer a borderline CI candidate. (Stupid progressive loss, it really is never going to stop until she is at 120+ db....sorry, rant ended)

So, for a comparison I will post her unaided, unimplanted ear and her CI:

--   250hz   500hz   1000hz   2000hz   4000hz   8000hz
CI- 25 db   25 db    20 db      15 db     20 db     25 db 
Ear-50 db   70 db    90 db      90 db    105 db    90 db

That is a huge difference!

So, that brings me to the final, most exciting piece of news.....we have scheduled Miss Kat's bilateral surgery!! Her (tentative because of insurance issues) surgery date is May 19th! We are hoping to get her activated by June 15th because we are headed to CID for summer school! I am so happy that Miss Kat will be able to take advantage of this great opportunity with the benefit of two ear that hear well!!

We are excited and nervous but overall happy. It is so soon, but it needs to be. When we told Miss Kat she was a little worried. She very clearly remembers her last surgery. She said she was worried that it would hurt, and I explained that the doctor would give us medicine for the pain, and that if she hurt, I would give it to her. She also told me that she thought she wouldn't be able to sleep with the big bandage on her head. I told her that she could sleep on the other ear. (I think that she might have thought she was going to have a bandage on both ears, because we said "You'll have two CI's" not "You'll have ANOTHER, second CI, in the other ear". But she is clear on that now.) So, we went to the store and bought a "Hello Kitty" pillow and blanket and I told her that we will give it to her on surgery day (insert "Can I have (my) CI tomorrow?" "No" "WHY NOT??? I NEED my pillow!!" Argh...) So, now she seems to have her questions answered (except for why it isn't sooner) and she is at least willing, if not so excited.

We know this is for the best. She hears so much better with her CI than she ever did with her hearing aid (even when her loss was 20 sloping to 60db, so very long ago). It has open a whole new world of language to her. This is going to be stressful, and hard, but it will be totally worth it!

Results of the "big meeting"...

We had the "important meeting" about USDB a few days ago. They were discussing all the changes they intend to make, starting next year. There were good points, and bad, some affect Miss Kat, some don't, but I have opinions about every single one!

The followers of this blog know that USD's program has two paths. There is an "Auditory-Oral" program and an "ASL-English" choice. Beginning in Early Intervention , USD will be providing services that are "language based". That means that a parent must choose one of these languages and USD will provide the services that will help the child learn that language. My concern is for children like Miss Kat (and Cal, whose parents were also at the meeting and seemed as frustrated as I was!) We want our daughter to have fluency in BOTH spoken English AND ASL. We are having trouble figuring out HOW to get the services Miss Kat needs to meet that goal.

We were told that if we want (any) ASL our only choice is to go to the voice-off ASL bi-bi school. I do not believe that this environment is appropriate for a spoken language learner, especially a new cochlear implant recipient.

The only way to learn a language is through exposure and immersion. The only way to learn ASL is to be around people who use ASL, be exposed to it, and to USE it! The same is true, but to an even greater extent, for spoken language with deaf children. A child who is learning to use a CI needs constant auditory input. They need to hear the language, internalize it, and then use it themselves. They NEED sound and spoken language for their brains to organize the input they get from their CI's.

So, how do we balance the two? How do we give our kids the opportunity to be the most successful they can with spoken language and their CI's but also give them a visual language, and make sure they have 100% access through that language?

I had a very long conversation with one of the top USD professionals (who will remain anonymous!) and asked for real advice for *our* situation. They said that there is really no good solution at USD right now. They admitted that the bi-bi school can not support spoken language in the way that we want it, and that the auditory-oral program can't support ASL either. That person agreed that our plan was really the only way to go (at least here and now).

Our plan is one language at a time. Miss Kat has a strong base in her first language, ASL, and now she is learning spoken English. For the next two years, we will be focusing on speech and listening. A CI user gets the majority of their benefit in the first three years, so, for three years, we are going to work and focus on spoken language. Later, we will return our focus to ASL. We will return Miss Kat to an ASL environment and as she ages, we will allow her the control over her language preferences.

I hope that other parents are choosing ASL and CI's in spite of the hardships. I hope that we are making the path easier for those who will be traveling behind Miss Kat!

Bilingualism?

Last week I attended an AV training for our School for the Deaf employees. They was some great discussion and I learned a lot. While we are in no way an "AV family" we do use some AV-style techniques to help Miss Kat learn to use her hearing. We use that approach because I believe it is the most effective way to teach a deaf child to learn to listen and speak.

All that is really beside the point of this blog tonight. I am writing about a conversation that happen after our meeting. The new superintendent of the School for the Deaf (a big oral advocate, he used to run a private oral school in another state) was having a discussion (read: argument) with a SLP that was trained at Gallaudet. (A little background for those who don't follow Utah Deaf education- the new superintendent is changing the focus to early intervention with an emphasis on Spoken Language OR ASL-English. Parents must decide and then they will get the services for that particular path) So, I asked, "What about parents who want both?" I was told "Too bad" (AGAIN!!)

So, that day I was presented with two paths. One, fluent spoken language, the other ASL-written English with "oral skills". I was told by both professionals that the ASL bi-bi school would never be able to provide the kind of environment and services needed to help a child become a fluent spoken language user, BUT that the oral program will also never be able to provide the opportunity to use and learn age appropriate ASL skills.......So, where does that leave families like ours, and our intended bilingualism??

They said that each bilingual person has a primary language and we must decide what Miss Kat's primary language is going to be and proceed with our choices from there. We were given two scenarios for how Miss Kat would turn out as an adult, given our desires and path:

1. She would be functionally hard of hearing using her CI. Spoken language would be the language of her life. She would listen and speak and live in the hearing world, but use ASL and the Deaf world as a support.
OR
2. She would be Deaf. She would interact with the hearing world everyday, and use her oral skills to do that. She may even talk on the phone and things like that, but ASL would be her language of comfort and at the end of the day, she would always return to her Deaf world.

We are fine with either choice, but are those really our choices? Is there no one who feels equally comfortable in both languages and worlds? And is it possible for us to make that choice?? Isn't that her choice regardless of what we do in her schooling?

Another MAPing and IEP

Miss Kat saw the audiologist last week. Her MAP changed very little, so he wants to go to appointments every 6 months instead of 3 months....I remain unconvinced. Her audiogram was very good, she is hearing at 20-25 db across all frequencies. Her speech recognition threshold (not awareness, recognition. He tested her with 5 cards, and she has to point to the right SPONDEE word that he said) was at, get this, 20 db!!! She can understand speech at 20 db....ummm....she is DEAF!!! What a crazy world!

She also took the WIPI sentence test. She scored 20 out of 25, but several were not "hearing issues" but instead vocabulary holes. I found out that Miss Kat does not know the word pan....I guess I don't cook enough!

Also, next Monday we are having another IEP meeting for Miss Kat. Her "experimental period" in the oral class is over AND she met all her goals that we wrote in September. We are writing up new goals, and she is staying in her class. She is doing very well, her spoken language is exploding and her literacy is really taking off too. We still use ASL in our home, we attend a Deaf/ASL church and she still is great friends with her Deaf buddies, and we are active in the Deaf community, but right now, this is right place for her schooling.

Her IEP goals are not finalized but they will look something like this:


1. Katrina will use Sentence Pattern II (i.e. The boy walked the dog), Sentence Pattern III( The boy is funny), Sentence Pattern IV(The boy is on the table), Sentence Pattern V (This is my mom) in 4 out of 5 opportunities in spontaneous conversation, as recorded in at least two monthly language samples.
***These sentence patterns require Katrina to use the copula be, such as, is, am, are. Having these patterns down, also requires her to use ing, as well as prepositional phrases, adverbs, adjectives. ***

2. Katrina will use basic What, Where, Why, and How question forms in 3 out of 5 opportunities in spontaneous conversation, as recorded in at least two monthly language samples.
*** What we want to see Katrina do with her Wh questions is use : How many/much? What the boy eat?, How you do that?, Why not?, What for? Where is she running to? Who is Jon pushing? Questions are key to pragmatics/socialization. We want her to be able to converse in spoken language naturally with friends and family.***

3. Katrina will use the following adverbs-place in prepositional phrases, at, into, to, up, on, above, down, out, over, under, in 3 out of 5 opportunities in spontaneous conversation, as recorded in at least two monthly language samples.
***Having these adverbs of place will insure Katrina's ability to use the Sentence Patterns above, having a solid foundation of the 5 sentence patterns is key to spoken language fluency***


Listening

1. Katrina will answer What happened?, How many?, Where and Who questions in 3 out of 5 attempts, in each of 6 consecutive sessions.
***Not only do we want Katrina to ask these questions, but it is most important that she understands these questions in social situations, but during instruction. An example of how that would be tested is have her read a leveled reading book to the teacher, and then answer Wh questions afterwards.***

2. Katrina will sequence 3 critical elements/events from a story in 4 out of 5 attempts, in each of 6 consecutive individual tutoring sessions.
***This goes right with our goal of sequencing a four part picture story. The reason to have three? During reading we are continually going over comprehension, one way we do that is ask what happened first, middle and last. We will cut out pictures from the story have the page numbers unseen, and mix the pictures up, and then ask students to show us what happened first, middle and last. This helps them comprehend, and understand sequential order, as well as auditory memory. ***

3. Katrina will answer simple riddles in 4 out of 5 attempts, in each of 6 consecutive individual tutoring sessions.
***How we will test this, there will be 4-6 items on the table, items that have nothing in common, we will say some similar to "Katrina show me the item that eats bananas and has brown fur" one of those items will obviously be a monkey...before she will reach for it we will ask her to repeat what she is looking for. In that exercise, she will had to of listened for descriptions and functions, as well as identify the object we are talking about***

4. Katrina will repeat a 6-7 word sentences in 4 out of 5 attempts, in each of 6 consecutive individual tutoring sessions.
***Having Katrina successfully repeat a 6-7 word sentence really works on her auditory memory, as well as her articulation. We need to work on her articulation, to have strong articulation she needs to have the mechanics of oral language down. It is something that we are working on all the time, but we do not want to discourage her by focusing on the articulation of each work in her sentence excessively. We want her to feel confident in her ability to use the 5 Sentence Patterns we discussed earlier.***

I am FINALLY happy with some goals! Since the beginning of this whole journey, I have felt like professionals have aimed too low with Miss Kat's goals. Even when she was only 2, they would only write goals for the very next step. THAT IS NOT HOW IT IS SUPPOSED TO BE!!! We are supposed to be writing goals for a YEAR! She should make tremendous progress in 12 months. We should be aiming for that, not just what happens next. So, I got out my AuSpLan book and wrote down what *I* thought would be appropriate goals. I showed the teacher and she agreed. Thank goodness for AuSpLan and it's timelines! If there are parents out there reading this, and you don't have this book, GO BUY IT!! Now, the school uses a different system (CASTLE) so the teacher had to explain how her goals met the same objectives as mine, but I think we have finally come together!

Also, Miss Kat did another spelling test, and this time she got them all right! Woo Hoo! My Deaf daughter is listening to the teacher and writing down all the words her teacher says, and spelling them correctly! Maybe no one is as impressed as me, but to me, this is INSANE!

Have you guys seen this year's AB calendar? Look at this carefully.....

Look in the bottom corner....see anything interesting??

Yes, Miss Kat's drawing has been featured in this year's Advanced Bionics calendar.

Awesome!!

Another meeting

We are having a meeting with Miss Kat's teacher. It is time to write all new goals!!! Miss Kat has already surpassed all the goals and benchmarks we set up for her in September.

Woo Hoo!

We are now 13 months post activation, and Miss Kat is doing wonderfully! According to the school she is:

1. Using 6-7 word sentences
2. Follow commands with 2 critical elements
3. Discriminate 4 critical elements
4. Use and respond to all question words
5. Differentiate between singular and plurals

Not too shabby for baby ears!!!

Miss Kat also had her first spelling test this week. The words were:
1. So
2. But
3. Be
4. With
5. Need
6. Good

She missed only one. I think that is pretty good. (I am an awful speller. I hope that she has not inherited that from me). But we did discover that she is having a hard time hearing the difference between "th" and "f" and "d" and "t". We have a MAPing set up for next Tuesday, so I hope we will be able to fix those things up and she will be hearing even better.