Kat Reading

Kat Reading

Thursday, July 23, 2009

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?

Thursday, July 16, 2009

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


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.

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!!

Monday, July 13, 2009

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.

Tuesday, July 7, 2009

JTC Week 2, Day 4


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


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!

Thursday, July 2, 2009

JTC Week 2, Day 2


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.

Wednesday, July 1, 2009

JTC Week 2 Day 1


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


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


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.