John Tracy Clinic Summer Session Part Three

6/10/09

Today was another great day of learning.

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

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

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

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

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

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

John Tracy Clinic Summer Session Part Two

Date: 6/9/09

Today was another learning experience.

First, we are turning up Miss Kat’s hearing aid. She could be getting better gain. I have been asking about this for awhile, but have been pooh-poohed since she now has the CI. I am crossing my fingers and hoping that the audiologist will let us borrow a loaner aid. It would be an Oticon Sumo. It is the most powerful aid on the market right now. The audiologist is actually worried that since she can hear at 250 Hz, it might be too powerful!

Second, we discovered that Miss Kat can talk on the phone! She used the handset on the landline phone in our apartment and did pretty well but then we discovered the speakerphone feature and she is doing amazing with it. She can understand almost everything Daddy says, plus she is talking a ton to him, also. (I have to translate some, though)

We also had a class about bilingualism. It was focused on learning two spoken languages but I was able to apply many of the points to Miss Kat’s bimodal/bilingualism. The biggest key I learned was that research shows that the child needs immersion in each language for at least 35 hours per week. They have found that 35 hours is the magic number for fluency in the language. I am hoping that this information and research will help us with the schools back home. We feel like access to BOTH languages is the key and now I have research that shows a definitive number that we need to aim for. 40 minutes of spoken language a week just doesn’t cut it!

I also got a few moments with Miss Kat’s teacher. She thinks we are doing all the right things. She was impressed that Miss Kat could ID “no voice” in the Ling sounds. I also spoke to the director and she thinks we are balancing things very well. I hope so…

Tomorrow I have an appointment to see the counselor… probably because I wrote on the paper that I was worried that oral education would ruin her life. (Go figure!)

I’m also going to meet with Miss Kat’s SLT. I am going to ask her if she thinks Miss Kat is in the right classroom. I worry because none of the other kids seem to have any language. Miss Kat is telling me that none of the other kids talk to her (just the teachers) and I have noticed that as well. The other kids just sit there. They aren’t able to communicate yet. But I worry that if she is in the higher level class, she will end up getting left behind. I haven’t seen very much of that class, but the kids seem to be functioning at a much higher level, so I worry that it would be too difficult for her, or that the kids wouldn’t understand her. So, tomorrow I will ask the SLT her opinion.Also, I hate that they make Miss Kat lay down at nap time. She hasn’t napped in two years! An hour and a half of doing nothing, in the dark? Come on, she’s six! I sent her books and things, but I worry that she isn’t doing them, but that she is sitting alone on that stupid mat. I hope not. I’ll ask about that tomorrow, too.

John Tracy Clinic Summer Session Part One

Date: 6/8/09

1. I HATE California!

We left home at 3am Saturday morning. We figured we would take about 12 hours to get there. I was hoping by leaving at that dog-forsaken hour, I could get about six hours of driving in before Miss Kat woke up. I was wrong. It was only about four. It wasn’t bad, though. She was very cheery and excited for the trip. It’s overall not that bad a drive UNTIL we get to L.A.

I had to make three freeway changes in the space of a tenth of a mile and then, at that moment, Miss Kat got carsick (it happens sometimes. She gets it from her Daddy.) and she starts screaming that she is going to throw up. There’s nothing I can at the moment since I’m concentrating pretty hard on not getting us killed, but she won’t stop screaming. I finally turned and said “Fine! Throw up! I don’t care!” She doesn’t.

So, we find JTC and I discover that I have forgotten the paper that tells me the apartment name and address. I can’t go into JTC, or anywhere else for that matter, because everything is gated and locked and there’s nobody in sight. I pick up the phone to call home and discover that my cell phone isn’t going to work here…

What do I do now??

I end up getting a handful of change and finding the world’s most expensive pay phone (not in a lovely part of town) and I call my sister and husband. After about an hour of standing in the heat, I am able to get the address and figure out how to get into the building. But while I was on the phone, Miss Kat did end up throwing up all over the sidewalk… poor baby.

So we finally get situated and today we start school. Miss Kat is in a class with four other kids. Two have implants (one bilateral) and two have hearing aids. They are all younger than Miss Kat, but I think that will be okay. The first 45 minutes of class, parents stay and play. We do a listening test and just get settled. The classrooms (and speech rooms) have one way mirrors so whenever we have a free moment we can sneak over and watch the kiddos. Miss Kat seems to really like the class. I hope she is doing well.

The parents’ schedules are very busy as well. While today was mostly an introduction, we did have a session with the counselors. They had us write a letter about our hopes for the week. We sealed them and will read them at the end of the session. Mine was mostly about fears. I also wrote for a counseling session about my fears. I told them that I worry that if I take this next step and begin this path of oral learning that I will end up crushing her spirit and ruining her emotional well-being. That is my biggest worry.

I’m also having some trouble with Miss Kat’s behavior. 99.9% of the time she is a wonderful girl. Don’t get me wrong, she is no angel, but she is always trying to do the right thing. She doesn’t ever (usually) do things she knows are wrong. Mostly our issues are from misunderstanding expectations and from her just general monkeying around. But today was different. Miss Kat was on her scooter (a birthday present from her Nana and her favorite thing EVER) and I very clearly explained where the boundaries for riding were. She did not like them, so she absolutely ignored me and rode off down the street. I FREAKED OUT!!! I do not like this area, and whenever we are outside I don’t feel safe, so I do not want Miss Kat out of my sight at all. This is different from home where she walks (or scoots) over to her Nana’s or Grammy’s house by herself all the time. I was so upset and I was very firm with her and told her that it wasn’t okay and if she couldn’t follow the rules, we’d have to go back inside. She got upset and threw a royal fit. I finally got her calmed down (after I was repeatedly being told that I was not nice and many, many tears). A few minutes later she decides she wants to have a picnic out there on the lawns. I told her we needed to wait a few minutes because we had just eaten and that we would get cookies and come back down and have our picnic. She got ultra-pissed and picks up our only dorm key and chucks it. I immediately start hunting for it. For forty minutes I search the lawn for a little gold key. Miss Kat says “Oops. I made a mistake. I threw the key. That was wrong. Sorry.”, but otherwise she doesn’t care at all. She won’t help me look. She won’t even stay in one spot so I don’t have to watch her. She still believes that nothing really matters and that Mommy and Daddy can fix anything. She tried to tell me to go to the housing people and get a new key. I was really frustrated with her. I wish I had handled it better.

I am worried that all of this is too stressful for Miss Kat. I hope that this is just a transition issue and not another or a bigger problem. I’m going to give it a few more days before I make any judgments.

One last super cute thing, though. When we were walking over to the school, I was reminding her that JTC is an oral school. She said, “Yes. This is a talking school, but if the teacher wants to know any signs, I will raise my hand, and tell her.” How sweet is that?

Busy

Well, my busy summer has started. I'm off to John Tracy Clinic (and considering bilaterals). I won't have access to the internet, but I'll compile all my thoughts and post them here when I get back. See you then!