Chance just gets better on the phone

In the past few weeks, I have had the opportunity of talking to Chance on the telephone. I was at a conference a few weeks ago and called home to talk to the kids. Then today, Chance called me to tell me that he was at a friend's house.

I am happy to report that it is getting harder and harder to tell the difference between Chance and my other kids on the phone. It used to be that I could tell right away when Chance got on the telephone. I had a hard time understanding what he was saying, and he did not understand what I was saying most of the time. Now however, I find myself talking to Chance and then it dawns on me a few seconds into the conversation that I am talking to Chance and not one of the other kids. The reason I come to this conclusion is not what you might think. It is not usually because Chance's speech gives him away. It is because he will say something that identifies him like who he is playing with, or what he did at school.

I am in awe each time this happens. Not so long ago, if Chance's dad or I called on the phone to talk to the kids, it was just a given that Chance would not understand what we were saying and we would struggle to understand him.

I have to give a lot of credit to Chance though. Even though talking on the phone was difficult for him, he never gave up. He would try with his hearing aid and with out his hearing aid. He would try different settings on his hearing aid. Once we got the implants, he did the same thing. The implant does have a setting that helps Chance to hear on the phone. I think that he must have learned to switch to that setting when he calls from other peoples houses because today when he called me, the conversation just flowed like it does when I talk to anyone else on the phone. Chance heard me, and he responded to my questions. What's more, when Chance first called, I did not get to the phone in time. I noticed on the caller I.D. that one of the neighbors had called, so I called them back. To my surprise, it was Chance that answered their phone. Chance recognized that it was me on the other line right away with out me telling him who I was. So, now he answer the phone at neighbors houses too I guess:)

Heather Whitestone

I attended a conference yesterday where Heather Whitestone - the first deaf Miss America - spoke. It is always nice as the parent of a deaf child to see deaf adults who are out in the world living normal lives.

Heather had a hearing aid all growing up and did not receive a cochlear implant until she was an adult. I say hearing aid because only one of her ears had a hearing aid. She went through school being profoundly deaf using one hearing aid!! Heather got a second implant as well and said that it makes a HUGE difference. She also said that if she had a deaf child (she is pregnant), she would get bilateral implants for the baby at 6 months! She talked about how good it was to hear from both sides.

We watched video clips of children who got cochlear implants at various ages. One at 13 months, one at 2, one at 2 1/2 and one at nearly 4. It did not sound like that big of a difference but the video clips showed a different story. The videos showed the kids a few months after getting an implant and then 5 years later. While all of the kids were doing well, there was a big difference in how close to their peers in language the kids all were. The kids implanted at 2, 2-1/2 and nearly 4 were not up to the level of their peers with language. The little girl who was implanted at 13 months though, sounded just like any other kindergartner. She even did british accents. Each child is different in how they will respond to the implant, but the message was clear...the earlier kids get an implant, the more likely they are to acquire language like their peers.

This all got me thinking about Chance. Chance got his implants later than the kids in the video and he was older than his peers at school when they got theirs too. Part of the reasoning behind getting the second implant for Chance was that he had gone two years with out any language at all, and he got the first implant "late" compared to many deaf children now.Chance also had some catching up to do. I have great hope for Chance however. He is thriving and he has received a great blessing in receiving his implants and adapting to them so well. I know that Chance will catch up to his peers in language and he will grow to lead a life out in the hearing world doing what ever it is that he wants to do. His deafness will not hold him back in anything.

Chance tells us about people who cannot hear..

Chance announced to us the other day that there are people who can not hear. He approached me while I was in the kitchen and said his voice full of awe: "Some people can not hear!" Then he went on to explain to me that some people can not hear doorbells when they ring. I told him that he was right, some people can not hear. I was amused that Chance did not include himself in that group. Then again, why should he? Chance can hear.

Chance went on to tell me that one of his friends at school could not hear but that he could talk to her with his hands. Chance does not know a lot of sign language, but he does know some. One of his friends at school has been using sign for most of the school year. Chance has added to his sign language skills by signing with her. Who knows, maybe Chance will learn more sign language later.

While Chance seems amazed that some people cannot hear, he truly seems to recognize the value of his implants in helping him to hear. If the batteries need to be changed, Chance tells us all to wait so he can hear. The other night just as we were about to say a prayer over the food, Chance said, "STOP! My battery is dead." Then he ran over to the drawer and proceeded to change the batteries in his implant. He kept looking at all of us around the table to make sure that we were waiting for him. I am delighted that he cares so much about hearing what is going on and being a part of things.

A strangers observations...

Chance had an appointment with the audiologist a few days ago. As it turns out, when Chance was tested in the booth, his mapping did need to get tweaked a little. Now Chance is fine with using the newest map. The audiologist did not leave the option of using the old mapping though. He said that he often has to do that with adults. People will get comfortable with their old mapping and resist using the new one. So now the option of using the old program is not even there. In Chance's case, there really were some adjustments that needed to be made, he was not just avoiding using the new mapping. He told me tonight that number one(program one) works fine now.

Chance's dad actually took Chance to his appointment. He does not get many opportunities now to be at the audiologists office so Chance wanted his dad to come. We have exhausted our babysitting options so Chance's dad took half a day off of work to accompany Chance to his visit. Taking other kids to an audiological visit like the one that Chance just had is only second to having them all with you while you are in labor. Everyone has to be quiet for about 3 hours while test after test is done to see what Chance is hearing. There are booth tests where Chance is tested with one implant on and then the other. Chance is tested with both implants on and then taken out of the booth to test things in another room. All the while, things have to be quiet with limited distraction to Chance. Chance also does not like to be in the booth alone, so whoever takes him to the appointment sits in there with him. It is really unfair to ask all of the other kids to sit quietly for 3 hours locked in a tiny room where they can not talk or do anything that would distract Chance. I have had to take everyone to an appointment before, and we all lived. Though afterwards, I was exhausted from trying to come up with ways to quietly entertain everyone and at the same time, help Chance and get the information that I needed from the audiologist. So it can be done. But it is not pretty. The appointment lasted about 3 hours, so when they were done, Chance and his dad went out to get some lunch. Chance is always a real trooper during these visits and does what is asked of him.

While they were eating, a woman noticed Chance's implants. It turns out she is a special education teacher and she commented on how well Chance was talking. Then she asked how long Chance has had implants. When Chance's dad told her, she shook her head in disbelief. She did not believe at first that Chance had only had the implants for less than a year.

It is so good to hear other people tell us how well Chance is talking. Since we live with Chance day after day, and know where his language was, we see dramatic improvements everyday. But when strangers or people that Chance does not see that often notice how well he is doing, it shows that Chance's language abilities are expanding to the point that he is talking more and more like hearing kids his age are.

Every day we see improvements in Chance's language abilities. New words, new phrases, and new concepts that he is able to express. It is very gratifying to see that other people are sharing our observations as well.

Chance hears the kids hiding while playing hide and seek

Today was spring break and so many neighborhood children joined my kids in playing a game of hide and seek. Kids were dashing all over the house trying to find hiding places. As Chance was counting, the kids decided to hide out in the garage.

I wasn't sure if Chance would even think to look in the garage. But as soon as he finished counting, Chance ran over to where the garage door was because he had heard something over there. Chance looked around and then ran back the other way, but he did hear and localize that he had heard a noise several rooms away from where he was counting. Later, as Chance dashed back through still looking for kids, I may have given him a little hint as to where the kids could be.

We have found that the second implant really helps Chance localize sound. He turns to where the noise or sound comes from, and he is much more consistent in localizing where voices are coming from. I can call Chance from across the house and he will hear me.

This is especailly good news for Chance's older brother as it gives us another child to call when we need things done :) For a long time Chance could not hear when we called him so his older brother was the one we called to turn out the light as they came up the hall, or to get a baby blanket or to lock the door. Now Chance has no protection against our requests. We know that much of the time, he can hear us :)

Chance uses phrases other kids his age do...

I had therapy with Chance and his teacher today at school. His teacher was excited because she said that Chance is picking up and using phrases that other kids his age are using. For instance, he says "more faster," when describing how fast his bike can go in relation to his brother's. Sure it's not grammatically correct, but it is phrasing that other kids Chance's age are using.

His teacher said that she is hearing Chance say more and more phrases that other kids his age are using. HEARING kids his age. His teacher says Chance is using more complex sentence structure and more vocabulary. She said that if Chance is telling her something, she can ask "and...." or "but....." and Chance will continue on sharing more information.

Chance also used the word 'between' in a sentence this week. Chance is obviously getting more and more language the old fashion way....listening to others and learning from what other people are saying.
This is a far cry from where we were less than a year ago when we (Chance and us) had to work at just getting Chance to understand what we were saying. Now, Chance is branching out and able to focus on new words, new phrases, new language instead of struggling just to catch what was being said dirctly to him.

Needless to say, this is a happy day for us:)

Obeying...when you don't know what it means

(An entry that was written last month, but was never posted:)

Tonight, Chance ran up to me as I was finishing dinner and said," I obey you today!" I told him that yes, he had obeyed me today. Then Chance asked me what obey means. Interesting. We've been using that word for quite some time. I explained to Chance what obey means and gave him an example. His eyebrows went up like they usually do when he is surprised about something.

Chance then asked me an odd question. He asked me if he obeyed when he was little. I told him that he was a good boy when he was little. Then Chance asked me again if he obeyed when he was little. He was very concerned about this and my saying that he was a good boy when he was little was not satisfying him.

Somewhere in our conversation tonight, Chance had mentioned his ears being broken and that is why he has implants. So I told Chance that he could not hear us when he was little because his ears were broken but his dad and I did not know. Chance was intrigued by this. I told him that when he was a baby, his ears were not broken but that he got sick and his ears did not work right anymore after that. Chance was really interested and asked me how old he was when his ears broke. I told him that he was 1. Chance was amazed by this conversation. He told his brother that his ears had broken when he was a baby. Then he looked at his baby brother and asked if he could hear when he was his age. I told him that he was about the age of his brother when his ears broke. Chance nodded and then said,"And now I can hear!" Then he ran off to play.

It made me think also to see my baby and realize that if he had been Chance, he would not be hearing at this time. I told Chance's dad about the conversation and he said that he can not wait until Chance has more vocabulary to share whatever feelings he has about this.

I still marvel that we did not catch that Chance had gone deaf. But who considers that their hearing child will just go deaf? Chance faked it really well. He had lots of people fooled. I still feel bad thinking about what it must have been like for him not being able to tell anyone what was happening to him. But I am at peace that we may never know exactly what happened. The important thing now is, Chance hears again and is no longer in his own little world looking in wondering what is happening in ours.

Chance realizes there is no free lunch..

At about 11:45 today, I realized that Chance may not know that he has money in an account at school for lunch. We have never used the account to pay for lunch before, Chance usally brings a lunch from home. As it happens though, Chance had change coming when he bought lunch several weeks ago, so I thought he could use it today. I forgot to tell him though. I told him on another day, but I did not remind him.

When I called the school, one of the teachers said that she would send someone to tell Chance that his lunch was paid for.

When Chance got home from school today, I asked him what he had for lunch. He tried to be strong and his eyes moistened. "I did not eat lunch today at school." He stated.

"Why?" I asked wondering what had happened.

Chance's voice rose a little. "Because daddy did not give me any money! And there was not a lunch in my backpack!"

Well, at least he didn't think that I was the one that slacked off.:)

"Chance, there was money in the computer at school! Didn't someone tell you?"

"Ya, but when I got to the lunchroom, the lunch was all put away."

Since Chance is in a unique program where he goes to a regular kindergarten class in the morning, and then stays in the afternoon for more school, he and his classmates don't get to lunch until it is winding down. Earlier in the year, I had gone on a field trip with Chance's class and we got back to the school a little late. Of course, that was another day when Chance had taken money to buy lunch. I ended up running (literally) to the lunchroom with Chance and the lunch ladies pulled some food from the back out for Chance.

I assured myself that surely someone had shared their lunch with Chance. He comes home with food wrappers of all kinds that we did not send in his lunch. All the kids share their snacks and barter for goods.

"Did someone share their lunch with you?" I asked.

Chance shook his head slowly and his eyes were moist again.

Apparently if you don't bring a lunch to share, you don't get anything either.

"Did it make you sad that you did not get any lunch?" I asked.

"No."Chance said trying to smile as he fought not to cry.

I hugged Chance and told him that I was sorry we didn't tell him about the money in the computer. I actually had wondered if Chance would be hesitant about approaching the lunch lady who sat by the computer since the lunchroom is so very loud. I don't think that Chance asked anyone for help. I am sure as it is hard for him to hear at lunch.

I asked Chance what he did since he did not eat. He told me that he went out to recess.

Well, we learned that we need to make sure to tell Chance when money is in his account. And, be sensitive that the loud environment in the lunchroom is difficult for Chance to hear in so he is less likely to ask for help.

"For when people are loud"

Chance is not attaching to his new mapping. He got a new mapping done on his implant a few weeks ago, but when ever we check his implant, it is back on the old map.

When they program implants, there are 4 settings they slide programs into. Setting one may be the newest setting. Program two may be a setting to use for groups that focuses the microphone directly in front of you so that you can better hear people talking to you, isolating their voices from the surrounding noise. Program 3 may be the old program. It just depends on what you and your audiologist feel is right for you.

Chance's programming had setting one and two being the new program, program 3 being a setting to use in groups, and program 4 being the old mapping. Before seeing the audiologist a few weeks ago, Chance had not had his mapping retouched since November. Chance apparently bonded with his old program as he keeps flipping his implant to number 4.

When we ask Chance why he does not like programs one and two, he tells us that "it is for when people are loud!" Hmmmmm. Since none of us have experience wearing implants ourselves, we don't know how this would sound. But Chance seems to have some kind of aversion.

We'll be going back to the audiologist next week, and we'll see if we can get to the bottom of this little mystery. The audiologist spent lots of time asking Chance questions and working with him to get the right mapping. For our next appointment, the audiologist has blocked our 3 hours for us. And that was before we knew that Chance would have attachment issues with his new mapping! The plan at the appointment is that we will test Chance with both implants on, check residual hearing etc.(what Chance retained of the hearing he did have before getting the implant. It is common to lose some hearing you may have when you get the implants. But when your own hearing lets you hear garbage trucks, airplanes and lawn mowers, and leaves out most of the speech sounds like Chance's hearing, you can only go up from there:)

The speech fair...

Tonight Chance was a cowboy. Which is just as it should be as he wears cowboy boots and cowboy hats half of the time anyway.

Each year, the local AG Bell chapter, (The Alexander Graham Bell Association for the deaf and hard of hearing), puts on a speech fair. It is a time for the deaf and hard of hearing kids to strut their stuff so to speak. The kids get to practice performing in front of a group, and they wow us with their ability.

Chance's class all recited part of a poem this year. Chance has been practicing his part really hard this week. It is a bit of a tongue twister, but Chance pulled it off with out a hitch. His part was ,"I ride, and rope, wild horse too.

And bring them to my camp!"

We really worked on putting feeling into the lines and articulating the words. Especially "I ride and rope wild horses too." Chance did a great job and had fun with his friends doing it.

Watching all of these kids, most of them profoundly deaf, get up and perform, is astounding.

Beaming parents watch their kids with a sense of awe as they witness what these kids are truly capable of.

A flashback...

Tonight, when Chance said his prayer before he went to bed, it reminded us of the old days before we knew that Chance was deaf.

Back in the day, Chance's prayers would sometimes go on and on and on and on. We didn't understand a lot of what he was saying ,but we could feel that it was heartfelt.

Tonight Chance also had much to express in his prayer, but this time, we all understood what was being said.

The best part though, was when Chance had stopped praying, but then said "Uh oh! I forgot something!" So he folded his arms again, closed his eyes and said, "And thank you for my implants so that I can hear. Amen."

Amen.

Thoughts on insurance...

We have learned much about insurance companies through having a deaf child. We all know that insurance companies don't like to pay for things. But deafness seems to bring out a special aversion on the part of insurance companies.

We fought the insurance company to cover hearing aids going through all 3 appeals and lost at all levels. We fought for 18 months to get the first implant covered going through 3 levels of appeals that time too. Now, we just found out that insurance is refusing to pay for the mapping of the implants. We have been told that the cost is anywhere from $150.00 to $200.00 per ear. We are currently in the process of getting Chance mapped again and will have had at least 3 appointments by the time we finish for this session. I don't know if we are billed for each individual appointment, or if it will all be lumped together. There is no set number of appointments that one needs to get an implant programmed. It is very individualized.

It is interesting to note that we have had 4 different insurance companies since finding out about Chance's hearing loss and each of them have balked at covering services related to his deafness. We have shelled out thousands of dollars out of pocket because the insurance companies do not deem deaf services as needed. Or they can some how justify to themselves not covering the services. (Some of the reasons we’ve heard from insurance companies are “deafness is cosmetic,” and “deafness is a purely educational issue.”) And since you have insurance, there is no aid to help you pay for services. You are ranked into ‘have insurance’ and ‘don't have insurance’ groups regardless of whether your insurance actually covers the services you need or not.

The really tragic thing is, helping these kids get services now, makes a huge difference in their quality of life now and later. And time if of the essence. Getting language into kids is so imperative to their success with implants, that delays due to fighting insurance companies robs deaf children of precious time. Time that quite frankly, they don't have to spare.

The battles with insurance companies will go on sadly enough. How it can be justified that technology that helps deaf children to hear and integrate into society at large, is not necessary to cover, is beyond my understanding. I cannot fathom what the justification is for not providing coverage of something that makes such a difference in children’s lives. And just when you think you have it under control, you are told of yet another service that your child needs that the insurance company will not cover.

And that is why the battle will go on. We will not quit fighting and there are others like us. Someday, when parents of a child who is deaf get that diagnosis, fighting their insurance company will not be a battle they have to take on. They will be able to put their energy into getting the best services that their child needs instead of just getting the services.

All the things he has wanted to know...

Chance has started asking us questions about things that happened months ago. It is as if he now has the language to ask what he has been wondering for a long time. About a year ago, Chance's older brother had surgery. Chance asked us last night why his brother had gone in for surgery. Nothing led up to the question, it was just as if his brain was sifting through questions he had been wondering about. He asked us if we remembered "a long long time ago....." and then proceeded to ask us about why the surgery had taken place.

We are ourselves wondering how many questions Chance may have as he begins to feel that he has the language to ask about things. It is great to watch Chance's expressions as things click that he had not known before or as he is understanding something for the first time.

Chance has started to ask questions about specific events in the past. I hope he continues to ask questions so that he can get a clearer picture of events that, at the time, he could only wonder about. You can see Chance thinking sometimes as he is trying to capture the words or phrases that he wants. Like the feeling when a word is right at the tip of your tongue, Chance seems to have the word right at the tip of his brain. He is just trying to fish the words out.

This whole process of watching Chance develop language and the ability to express himself is quite amazing. Every day I am reminded of what astounding things are taking place with Chance. We are very blessed indeed.

An interesting phenomenon

Now that Chance's language is growing by leaps and bounds, we are helping him more with the pronunciation of words. If we say a word to Chance, whether to give him a new vocabulary word or bring his attention to how the word is said, Chance can usually repeat it back really well.

Enter the process of growing up. Chance pulled (he earned this tooth loss) his third tooth out from the very front of his top row of teeth. Now, with some words, it is hard to know if Chance has made a speech error, or if the gaping hole in his teeth is to blame for a mispronunciation. It is quite funny. This development should ensure that the speech therapist at school does not get bored while working with Chance. They have been working with speech errors during their sessions together.

Chance looks a little different now too:)