Kat Reading

Kat Reading

Saturday, August 30, 2008

Speech therapy

Miss Kat had her first speech therapy appointment yesterday. She ROCKED IT OUT!!!! She did better than anyone could have ever expected.

Miss Kat understood words that I had no idea she knew! The therapist gave her a few little tests, and she was nearly perfect! She wasn't just parroting, she understood and would pick up the toy that corresponded to the word.She was able to discriminate between four, one syllable, "B" words. The therapist was so impressed that she looked up at the mirror and said "Wow, Mom, you guys must have been working!"

Katrina seems to have finally "got it". She understands that we want her to learn to listen. She understands that the sounds she hears are related to the sounds she makes, and that they have meaning. She now know that "BAY-BEE" means the ASL sign for baby (which she already understands means a infant). She gets it it, and she knows we communicate with our voices, and she wants to be able to, as well.

This was the missing piece we never had before. Miss Kat has been able to hear fairly well, she has great intonation and is able to parrot any sound she hears. She just has always seen it as a game. She has never connected the sounds she heard with the ones she makes. She also never cared! She didn't like when we would voice and she would insist that we be quiet. It has all changed. She wants to understand. I am so happy that she is older now. I know I couldn't have made this commitment when she was younger, especially if she wasn't interested in cooperating.

As we were finishing up, the therapist and I discussed the CI. She said that she believed that Miss Kat should get it as soon as possible. She said "There is no reason to leave her frustrated". She also said that she would call our audiologist and the surgeon and tell them to"fast track her"!!!!!

I am so proud of Miss Kat. She worked hard, stayed focused, and she did so well. I am starting to actually believe the the implant is the absolute right decision. This will work for her, and she will be able to learn to listen, and she will be able to learn to use spoken language. I have never been prouder!

We spoke to the surgeon's office!

Finally spoke to someone at the surgeons office. We have our appointment... Oct. 16. We need to get an MRI before then, and then we will be headed for surgery! I asked the secretary how long it takes after the appointment to actually get the surgery. She said that, of course, it varies but that it is normally 4 to 6 weeks after insurance approval. I told her we have medicaid and asked her how long that usually takes or if it will be a problem. She told me medicaid should approve quickly (so long as she is an implant candidate). I told her that she should be. She then said that they are starting to schedule at Primary Children's Hospital for Dec. 5. I was dumbfounded. We actually had a far off goal. I had mentioned earlier that Miss Kat is five years old now, so she thought to herself for a moment and remarked that Katrina could even be seen at LDS hospital since she was so old. She said that they have more OR time at LDS so it could be much earlier!

I can't believe we are doing this. Could this actually be happening? I've been thinking about how poor her hearing now is with her aids. We start speech therapy this week and I worry about how much good it will even do. She was making such great progress last year, I am concerned that it won't happen again. What if her hearing was so poor now that her speech and listening skills couldn't improved? It seemed possible. Her speech was very quickly deteriorating. Her "daddy" was now "baa". Even "No" was intelligible. She needs the implant to bring her back to where she was, let alone make it possible for her to improve. I am more sure than ever that this is the right choice for her.

I called and set up Miss Kat's appointment for her MRI. She hoes in Sept. 4 at 2:45. It is way before her ENT appointment, so I'm going to start calling every morning to see if they had a cancellation, so maybe we can move the whole thing up. I'm starting to feel the urgency. She needs this now. I don't want her to have to wait one extra day. The idea of 4 weeks between surgery and activation is killing me....

Tuesday, August 26, 2008

THE appointment

We had our meeting. It was long and intense. When we arrived, I think the audiologist had no intention of us getting an implant. I think that he might have even spoken to the individual we used to see!

Our conversation began with how well she could hear now. He said that he thought she should be getting better results with her aids. He thought that she should be speaking and understanding better. She was on the edge of being a candidate, but he said he didn't want to put her through a surgery to have her not use the device. He was concerned that she was "just one of those kids who can't learn to listen". I was devastated, but I completely disagreed. I think that she IS talking. That all the sounds she makes with her signs ARE words to her. I think that she is hearing so poorly that this is the best she can interpret.

He was also very displeased with her educational placement. I expected that. I knew that he would want her in an all oral environment. He said that he thought the best place for her to learn would be the Oral Deaf school. He thought that we should just throw her in and she would learn quickly. I told him NO! I was not interested in taking away her first language. Then he suggested a mainstream hearing classroom with an interpreter. I told him that I thought that was inappropriate as well. I told him that now that JMS was merging with the TC program, there was going to be more value placed on Oracy. I told him that her Kindergarten teacher was a hearing woman that we had in our home during PIP. She was also the TC Kindergarten teacher last year. The audiologist was very pleased with this information. I also told him that we had plans to attend private AVT listening/speech therapy twice a week. He remarked that he thought I was actually committed. I told him that I was glad that Miss Kat was older when she lost her hearing. I told him that I don't think I could have committed to the therapy and rehab if she was just a baby. I believe that she is old enough to see a difference and actually WANT to learn to speak. He was starting to see our perspective.

The thing that finally convinced him was giving Miss Kat a listening test. It was a closed set test, meaning that she had a card with 12 pictures and she was to point to the correct picture when he spoke the word. She scored a 15 out of 24, when just two weeks before she had gotten a 2! I had demonstrated to him that she COULD learn to listen. It took a lot of work and emphasis using the hearing aids, but Miss Kat had worked hard, and her reward would be the device that could make her job so much easier!

Friday, August 22, 2008

The changes begin

I was broken hearted that a professional would treat us with such disrespect. She didn't seem to care about Miss Kat's well being at all. She had decided that since we had not followed her directions and used ASL, despite her strongly worded orders, that this was her way of paying her back.

I spoke with a friend who has 2 CI children. She was appalled by my audiologist's behavior. She gave me the name and number of the person her children see. She told me he was a wonderful audiologist, and that he loves implants. He is rather aggressive, and perhaps a second opinion was in order. We had nothing to lose.

Our first visit was scheduled. I was terrified. I didn't know if I even wanted to get a CI for Miss Kat. Was I going through all this trouble for something that was a mistake? What if he said no? Or worse still, what if he said YES??? Was this truly what we wanted. We thought long and hard as the appointment approached. Yes, this was right. Kat deserved proper amplification. She had been able to hear in the past, and there were many indications that she enjoyed what she could hear. We didn't want to take away the language and culture that she has, we want to give her more. More opportunities for language, better access and the ability to communicate with everyone. We were ready to do this.

Thursday, August 14, 2008

Our hurdles

So, now our decision is made. We believe that Miss Kat would benefit from a cochlear implant. It is time to get the ball rolling. I made an appointment with the audiologist we have been seeing for the last 3 1/2 years.

It took a lot of courage for me to admit I had been wrong about CI parents, and implants in general. It was a very big deal for me to even consider it for my child, and even bigger for me to ask for information from a professional. I went to my audiologist hoping that I would find support and unbiased information. That is not what happened at all.

The audiologist said absoultly not. She told me that she would never recommend that Miss Kat get a CI, that the road ended here. She said she would never allow a child to be implanted unless she knew that the child would become 100% oral, and that since we decided to use ASL with Katrina, she wouldn't allow us to get an implant.

Further Complications

In the winter of 2007, Miss Kat lost even more hearing. I remember taking her back to school after an audiology appointment and telling everyone that she was officially Deaf now. Up until that point she had been "hard of hearing", but at that appointment she crossed the line to "severe". She was around 80 db in most frequencies. At the lowest (450 hz) Miss Kat still was "moderate" but in the speech frequencies, she was Deaf.

It was at this point that I started considering a cochlear implant. Miss Kat had never been a candidate before so I sort of judged other parents who implanted their kids. I believed that they wanted to fix their kids. They didn't accept their children as Deaf, they wanted to make them hearing. They were lazy and selfish. I only knew one family who used CI's and signed with their children. The rest were oral only and they shunned the Deaf community. I didn't want to be like those other families. I believed that ASL was the best, natural, first language for my daughter. I believe that I am raising a Deaf adult, so I take the long view and think about what will be the best thing for her whole self, emotionally, developmentally, and spiritually, not just focusing on her "broken ears". I was on a soapbox, judging people who I didn't know, because I could. It was a decision I didn't have to make so I could say that they were wrong and live in my happy little bubble....until I couldn't.

It took a few days and a lot of thought, but I finally mentioned the idea of a CI to my husband. I asked if he thought we should look into it. He immediately said yes, and that he thought it would be a very good thing for Miss Kat. I was so confused. Had he been pro-implant this whole time? He just said "It is a technology. It is neither good or bad. Our philosophy and home won't change, just what she uses to hear with. It is just a much more powerful hearing device, and it happens to have to be inside her." I was shocked again by how insightful and grounded J.D. always is. A CI wouldn't define us. It doesn't define anyone. It is merely another technology. A source of amplification, a tool for my child. I felt stronger, supported by my husband, we were going to start the journey to get a cochlear implant for our daughter.

Sunday, August 10, 2008

School begins

When Miss Kat was approaching her third birthday, it was time to pick a school. We had always taken a sort of Total Communication route in our home. We would sign in English word order, CASE, and speak the English words at the same time. Kat on the other had was much more comfortable with a more ASL structure. We needed to see the school options and decide which would be the "least restrictive environment" for Miss Kat to learn.

In our area we had 3 options at the school for the Deaf, and our local school district preschool. We started by visiting the local preschool. We knew right away this was no appropriate for Miss Kat. She would be the only child with a hearing loss that they had ever had, the class had 22 students and no one understood sign. That choice was out.

We next visited the self-contained Oral preschool class for the Deaf. It was in a normal hearing elementary school. They had three rooms full of new and cool toys. There were around 15 kids in the program with 3 teachers. We observed the class. The kids seem very behind. Most of them didn't respond when the teacher's spoke to them. They couldn't follow one step instructions like "Go sit down", several didn't seem to know their names! They had to use gestures to show the kids what they wanted. We asked if the teachers would understand when Miss Kat signed to them. They told me that they knew some signs and would probably understand, but they would NEVER sign back and that "Eventually, she'll stop too". We also made the mistake of signing when we were in the classroom. All the children whipped around and stared at our hands. The teachers got really grumpy with us too. We knew that this would be a terrible fit for Miss Kat.

Next, we visited the TC classroom. It was located just down the hall from Oral preschool. There were only 5 kids in this class. We sat down to observe, assuming this would be the placement for our Kat. The very first thing we were struck by was how behind the kids where. Miss Kat knew all her colors and letters and a few numbers before she turned 3, but these children were still working on single nouns! "Shoes" (signs shoes as well) "Shoes" (signs shoes again) "These are SHOES" (signs only the word shoes). There are 3-4 year olds who don't even know the word shoe? I was horrified. We also noticed that the teacher only signed every third or so word. When the teacher voiced "Let's all get our coats, line up, and then we'll go outside", she only signed "Coat", "line", and "outside". That was a terrible signing language model! Even I signed better than that! After we spoke with the teachers we also learned that they considered TC a class for kids who either weren't ready for the Oral class, or who had been in that class and failed. They had a variety of ages in the class and almost all had no language. We didn't want a class for failures for Miss Kat, and we didn't want her to stop signing. This was not the place for her.

The last option for Miss Kat was a school called Jean Massieu School. It was started as a charter school by some parents who didn't think the State School for the Deaf had good enough options. It is a Bilingual-Bi cultural or bi-bi school. That means the school is a voice-off program. All instruction and class room communication is in ASL. Almost all the students were Deaf children of Deaf parents. We had been told that since Miss Kat wore hearing aids and we were hearing, that we wouldn't want this school. We decided we should visit anyway. JMS was located in a run down old elementary school. It was their 4th location in 5 years. The toys were old and worn out, obviously most were purchased second hand or donated. There were four 3 year olds and three 4 year olds sharing a classroom. The kids ran over and started asking us questions as soon as we walked in the door. The oldest boy signed so fast and animated that I had no idea what he was saying! The youngest, Jamila, walked straight up to Miss Kat and signed "Two-of-us (are) friends now. Come play. (We) have a slide." I was hooked. These kids could communicate. They had language. They were normal kids at a normal school that happen to use a different language than I do. The children were being taught an age appropriate curriculum. They weren't behind. The teachers expected the kids to understand them, to tell stories, to communicate. They read stories, and had circle time. They weren't special needs, or handicapped, they were just Deaf.

Miss Kat now attends the Jean Massieu School for the Deaf and will be entering Kindergarten in a few weeks.

The next step...

We were sent to Primary Children's to see a pediatric audiologist. Miss Kat was fitted with Oticon Gaia (hot pink) hearing aids. We did more booth testing. With her hearing aids, Kat was hearing in the "normal" range. Her loss was sloping. The higher the frequency, the worse she heard. At 450 Hz, she could hear at 15 db WITHOUT her aids. But she quickly dropped to around 60db. The highest frequencies, 2000 and 4000 Hz, are where some of the most important speech information is. "Ssss" and "Shh" and "K" and "Th" are all high frequency. Miss Kat couldn't hear any of those without her aids. But with this technology, she could. She was aided to about 15 db.

This was going to work. Katrina would be able to hear us again. The audiologist told us that we should stop signing so we could focus on speech. She told me that if Miss Kat didn't learn to talk it was because I was a lazy mother. We disagreed. We knew that signing was working for Kat. She was able to tell us what she needed and understand some of what we said, so we kept signing.

Early Intervention sent a professional from the Parent Infant Program at the School for the Deaf to our home. Our first PIP adviser's name was Aimee. Aimee would come to our home and explain about hearing loss. She would teach us how to draw attention to noises so that Kat would start to learn that sounds have meaning, learn to listen. She would also come and teach us more signs.

Miss Kat had a difficult year. She was frustrated a lot, but she learned very quickly. She had 150+ signs by the time she was 2. We did a lot of explaining through pictures. We had trouble getting Kat to go to the car, so we made a chart. We took pictures of all the places we go, and then would stick them up on the chart so she would know the plan for the day. Then, if she would start to dawdle, we would show her the picture and she would get excited and get ready to go.

Christmas rolled around and we had to explain Santa. We spent hours looking for a book that showed Santa leaving presents under the tree. There were lots that showed Santa with presents, but we needed her to see that Santa had the gifts, and then he left them (and if possible, that he ate the cookies and milk that the kids left out for him!). We finally found the right book and spent weeks explaining what would happen and why. But she understood, and the look in her eyes when she woke up and her stocking was full was worth the effort.

When we found out that Miss Kat had a hearing loss, we began to attend a Deaf church and took ASL classes at our local Deaf community center. We breezed through the beginning ASL class with the help of our "Signing Time" videos. We switched over to the Deaf ward because, as she learned more signs, her nursery leaders started being nasty to her. "What does she keep doing with her hands?", they asked us one afternoon. And, "I just don't understand what she wants!" We no longer felt like she was in the right place. We went and visited the Deaf ward, knowing that we would be lost. The Deaf community was so welcoming and patient with our lousy ASL. They thanked us for learning, and embraced us and began teaching us. We knew that she was in the right place.

Kat received PIP services in our home, and speech. Her signing was getting better and better, but her speech and understanding was still poor. Over the course of the next 18 months she lost more hearing. She was moderately-severe now. And her language was growing to be only ASL. We still spoke with everything we signed, but she just wasn't understanding or responding with spoken language. We started to really focus on ASL. It was our way to communicate with our daughter. She understood language, and was learning quickly. It didn't matter that it wasn't our language. We are the parents, it is our job to meet her. She didn't have 100% access to speech, but her eyes worked great. We provided her with a language that she could access and she excelled.

Our story continues...

I called Early Intervention to seek speech therapy for Miss Kat, and they asked me a very odd question. They asked "Have you had her hearing checked?" I said, "Yes, twice." She had passed her newborn screening in the NICU, and she had had a sleeping ABR at 6 months. The ABR had shown a slight loss in one of the ears but the doctor said that she was probably just coming down with a cold. The EI people wanted to make sure that she was hearing ok so they had me make an appointment for a hearing test at the Department of Health.

That night when I told J.D. what they said something clicked for him. He told me he was sure that she couldn't hear right. We sat on the couch and discussed it. Miss Kat toddled by and headed for the kitchen. When her back was turned to us, he called her name quietly. She didn't react, then he clapped his hands loudly. She whipped around. He grinned at her, and then turned to me and said, "See!"

I remember sitting in the waiting room at the Department of Health. I was confused and scared. We got called back to the testing area and Miss Kat sat on my lap. They had a little TV on the desk in front of me with the sound turned all the way down. Sesame Street was on. The lady put a soft little probe into Kat's ear and waited. She looked confused. She took the probe out and listened to it, and mutterd "Weird". She told me that the machine must not be working, so we would move on to the booth test.

In the booth, Miss Kat would listen for a sound and then when she reacted a little dog would dance for her. She loved it! Kat paid attention very well. I was pleased that it went well, but knew she didn't hear everything I did. The lady walked out and said "Well, that explains why she didn't pass the first test, she can't hear!"

She sat me down, back in front of Sesame Street. She explained that Miss Kat did, in fact, have a hearing loss. She told me it was only a moderate loss and Katrina was going to be fine. She said she would learn to talk and go to school like regular kids. She made an appointment for us with an audiologist at the children's hospital. She told me Miss Kat was going to need hearing aids, but it would all be fine.

I went home that night and cried. Why was more happening to my baby? Hadn't she had enough problems for one lifetime? What did her future hold? J.D. was again level-headed and very matter of fact about the whole thing. He said "She wasn't talking for one of two reasons. Either she was deaf, or stupid, which would you rather have?" This comforted me. Miss Kat was fine. She would be ok. She would get her hearing aids and be right back on tract. Everything was going to be fine.

Today, our first day

Well, I decided to start a blog. We are taking the first steps towards a cochlear implant, and I believe I need to record this journey. It will be full of highs and lows, important steps and set backs, and I want to remember it all.

An introduction, to begin?
My name is Melissa. I am 28 years old and married to a wonderful man named J.D.. We have one daughter, Katrina. She is 5 years old and headed to kindergarten. She is Deaf.

Miss Kat was born 6-3-03. We had a long and dangerous labor which ended with two failed forceps attempts and then an emergency c-section. I was unconscious for the delivery, but things did not go well. Kat was born very sick. She had passed a bowel movement in-utero and then inhaled the meconium into her lungs. Meconium is sticky and black, just like tar, and it was in her lungs. Miss Kat couldn't breath. We were told that she needed to be put on a very special machine called ECMO. ECMO stands for Extracorporeal Membrane Oxygenation. It is a heart and lung bypass machine. We were told that if she didn't get on ECMO, she would die. We later found out that they don't use this machine unless the baby has a greater than 90% chance of death without it, and still, 50% of the babies die.

Well, Miss Kat got better. She survived. She was taken off ECMO and she seemed to be just fine. There are a lot of side-effects from ECMO. Kids can have strokes, brain damage, blindness, paralysis, deafness, circulation issues, permanent lung damage such as asthma and more. But Kat was ok. When we left the hospital 6 weeks later, she was on oxygen, but very little, and was weak, but all around pretty healthy. She was doing great.

Miss Kat's first year was very normal. She had some small kidney issues, and was on the oxygen for 6 months, but otherwise was extremely healthy. She was a very strong willed baby, bossy about the things she liked and very vocal about the things she didn't! She developed just like any other baby, and at 9 months started babbling "Mamamama". I was ecstatic! I had won the battle, she had said MY name first! But then on Daddy's birthday (at 10 months 19 days old) Miss Kat took her first steps all alone. What a birthday present!

When Kat's first birthday rolled around, she had 3 words. We started doing baby signs with her. We would watch the "Signing Time" videos and teach her the words. We started at the table one night at a restaurant. Daddy had a cookie. I signed "cookie" and voiced the word. Daddy said and signed "cookie" back and then handed it to me. Miss Kat's eyes light up. She immediately signed "cookie"and said "ooky". Daddy handed her the cookie, and we were off!

Time passed. At 15 months Kat had the same 3 words. When we went to the pediatrician I mentioned that she wasn't gaining words. The doctor said she thought it was fine, but she had to look it up! She told me it was normal for a 15 month old to only have 3 words. I wasn't sure. We continued to sign with Miss Kat. She was picking up on the signs but she stopped voicing. There was no "moe" with her "more" sign anymore. I was very concerned. When her 18 month old check up came around, I asked the doctor again. He seemed to think she was fine. I disagreed. My family has a history of speech issues. I had speech therapy as a child (a lisp), my sister was completely non-verbal at 3. She had to learn one word at at time by touching the therapist's throat and mouth to figure out how to form words. My father showed up to kindergarten unable to speak. I knew that Miss Kat needed help, so I called Early Intervention myself. I told them that I thought my daughter needed speech therapy.
That phone call changed our lives.