Wednesday, December 27, 2006

Chance's first thought on Christmas morning.

Christmas morning began at our house like it did for many other families across the nation. Kids getting up in the middle of the night in anticipation for morning and then parents telling the kids to go back to bed for a while. The kids actually did really well. We had all of the kids sleep on our bedroom floor so that we could all go out together in the morning. Chance is always our best child at sleeping through noise:) His is truly a peaceful, quiet sleep as there is no need to wear the implants as he is sleeping.

In our home we have a tradition that daddy always goes out to man the camera as the kids come running out so that we can capture that Christmas morning excitement. So as daddy goes out to set the camera, we all huddle in my bedroom waiting for the go ahead to come barreling out at full throttle. As we sat back in the room eagerly awaiting the signal to come out, Chance turned to talk to me. His expression was quite serious and not what you would expect for a child who at any moment would be discovering what Santa brought. With deep concern, Chance said to me, "I will not be able to hear what everyone (he then named all of us in the family), said. First I need my implant."

I called out to his dad, and we got Chance his implants before anyone ran out to see the gifts. It was quite telling to me that here was Chance on Christmas morning, and his first concern was that he have his implants on so that he could hear all of us. It makes sense of course. I was just thrown off guard by the fact that with all of the Christmas morning anticipation, Chance wanted his implants on first thing. We had a Christmas miracle at our house. It took longer than just the Christmas season to evolve, but this Christmas, found our little deaf son hearing what his brothers and sister said as they opened their presents on Christmas morning.

Sunday, December 24, 2006

Chance's language continues to get clearer and clearer

Being as it is so close to Christmas, I needed to make a last minute stop at the store the other day. However, since school is out, my kids had made plans to sled, and play with friends, not shop. In order to get Chance excited about shopping, I told him that the friend that he was playing with could come with us.

So there we were driving around town, and Chance and his friend were giggling and talking in the backseat. They were doing all of the normal things that kids do....count to 100, point out where their doctors offices were. And Chance could hold his own when conversing with a peer. Oh, its not perfect. Chance will never hear everything, and he has a lot of catching up to do. But, since getting the second implant, we have seen a marked difference in Chance's articulation, the things that he hears and his ability to communicate. He progresses each day. I am continually amazed at what he is saying and how well he is expressing himself.

Chance is going to be ok. Last year at this time, we were in a battle with the insurance company to cover a cochlear implant for Chance. We were wondering what we would do if the insurance company denied all of our appeals. It was a difficult situation to be in. We wanted so desperately to help our son, and we knew that he needed more than the hearing aids. Chance was determined to talk and was so persistent and willing.

Now, here we are a year later, and Chance is progressing with leaps and bounds. It is quite amazing to watch his language emerge. I always knew that Chance could do it. More importanly though, Chance always knew that he could do it. He just needed the technology to back up his desires. We've come a long way since last year at this time. We feel very blessed and know that Chance is doing exactly what he was meant to do....hear.

Monday, December 18, 2006

A pretend phone conversation with real meaning

Chance and his brother both have pretend cell phones that they like to pretend to call each other from. The other night we were driving in the van and I heard the boys talking in the backseat. It was not your normal little boy conversation though so I tuned in to see what was going on. After a minute, I figured out that the boys were having a "conversation" on their cell phones.
Chance made a ringing like sound and then his brother answered his phone.
"Hello! This is Chance."
"Hi Chance."
"We need to go to the store to get something."
"We need some milk." His brother offered.
"We need bread, cheese and bananas and milk." Chance says.
"Oh, yeah." His brother verifies.

Chance's speech was so clear. And he has polite phone etiquette which is amazing since he has not been able to answer the phone at home. I have noticed more and more, that Chance is getting better with his pronunciation. He is coming along so well! I think that even some of the kids in the neighborhood have been surprised at how well Chance is articulating his speech and the things that he can say now. Some of the kids still need to realize that Chance is easier to understand and can express a more diverse range of thoughts.

Tonight we went out caroling with neighbors. Everyone made cookies to share and after we were done, we gathered around the fire pit of a neighbor to sip hot chocolate and eat goodies. When it was time to go home, Chance took off ahead of me and got home a few minutes before I did. When I got to the house, Chance's dad met me at the door and said, "Chance says that he fell and his implant came off." I asked if it was the one with a dead battery,( I noticed that one of the implants was dead at the fire pit). This would make a BIG difference as the implants have a blinking red light on them if they are working. According to Murphy's Law, the dead implant was the one that had fallen off. So, Chance and his dad and brother headed out in the dark to look for the implant. Thankfully, Chance could lead the search party right to the spot where he fell. A neighbor driving by asked what they were looking for and her son who is Chance's age got out to help search.

We thought we had the "keeping-the-implants-on" issue under control when we had the molds made. And we did until Chance's little sister took the molds off. She has a fascination with the implants. She has actually been really good for the past while at leaving the implants alone. But apparently the new molds piqued her curiosity and she took them off. She led us to one, but we have been unable to find the other one. Chance was there when his sister took off the molds so we have told him that he can say "no", if she is playing with his implants. He usually has a come apart if anyone messes with his implants. We have told the kids that playing with Chance's implants or taking them off is just like taking his ears off and is mean. And Chance usually raises such a fuse if anyone messes with his implants that we know immediately. However, Chance himself has taken the molds off and we have told him to put them back on. So, maybe he was not as devastated if someone took those off.

You know those stories that always come out when you are adults of things that you did when you were kids? You and your siblings sit reminiscing and laughing about events in your childhood while your parents say things like," I don't remember that," or "YOU DID WHAT?" Perhaps 20 years from now, we will be sitting at a family gathering and our kids will laugh about all of the things that happened with Chance's implants. I don't want to know.

Friday, December 15, 2006

Other people are attached to the second implant too...

This past week, I went into the school to observe Chance in his reading class. Chance is involved in a program called Reading Recovery at school where he is pulled out for half an hour and has a one-on-one reading period with a teacher. We are very grateful that Chance has this time. :)

This past week, I went in to observe what happens while Chance is with the teacher. When I got to the school, the batteries in both of Chance's implants were dead (what are the odds??). The teacher was rummaging through her desk trying to find batteries. I had some in my purse, but only enough for one implant. I told the teacher that I had enough for one implant so we could use one for the lesson, and then we could get more from Chance's main teacher or I could get some from the van before I left.

"No, we need both of them for this." The teacher said.

That made me laugh inside because every other deaf child at the school only has one implant and they do just fine. But Chance is doing so well with two implants, that only having one is not an option the teacher wanted to have. The teacher ended up finding a few more batteries and so we had two implants for the reading class.

So we, Chance's parents, are not the only ones seeing a big difference with two implants!

Wednesday, December 13, 2006

Chance sings a song for a train full of people

Tonight our family visited the North Pole. We boarded a train bound for the North Pole, where we were treated to hot chocolate, Mrs. Claus's secret cookies and a reading of "The North Pole Express". At the North Pole, Santa boarded the train and we got to visit. Of course, the kids were very excited about this. Santa even sat for pictures and gave the kids a bell.

In between visits from Santa, Mrs. Claus and refreshments, the elves and narrator entertained us. Our elves were named Sugar and Spice. It is interesting that when the narrator started signing to Chance, Chance knew what she was saying, but responded by speaking his answers.

The elves tell jokes and invite kids to come up and tell jokes too. Chance has an older brother that is not shy about getting up and telling jokes or being up in front of people. So in the past, Chance's brother has been able to get up in situations like this, while Chance sat back and watched. For a while, Chance just seemed content to sit back. But for the past year or so, Chance has wanted to get up and have a turn too. We always tried to make sure that Chance got to be involved, but he was not up to the task of telling jokes yet. He was not himself getting the jokes let alone getting up to share jokes of his own.

Tonight, Chance wanted to get up and have a turn after his brother had told some jokes. We tried to think of a joke that we could tell Chance and then he could share, but we were dry. Then the narrator had a child sit up with her to help sing a Christmas song. This was perfect for Chance! He knows Jingle Bells and can sing it with gusto. So we asked Chance if he wanted to help sing Jingle Bells and he nodded in the affirmative. It was wonderful!! Chance sat at the microphone and led out with "Jingle Bells", singing with much spirit. He was so proud to be able to get up and have a turn like his brother and the other kids. It was a great moment for us to watch and see his confidence that is growing more and more.

Sunday, December 10, 2006

Chance hears a whisper!

Chance heard us whisper to his brother! We were getting ready to leave early from church and so we whispered to Chance's brother to gather his things. The next thing we knew, Chance had his things gathered in his arms and was ready to go. Chance's dad and I looked at each other and smiled. It never occurred to us to whisper to Chance that it was time to go....we are not used to him being able to hear anything like that.

We have started to notice a difference when Chance only has one implant on. As luck would have it, Chance's left implant ran out of battery power just as Chance got to the end of the line to sit on Santa's lap. When Santa pulled Chance onto his lap, Chance's left ear was the one closest to Santa. As Santa asked Chance what he wanted for Christmas, Chance had the look he gets when he is not hearing but is going to fake it. Problem is, for the past several years, Chance has not realized that the first thing that Santa does when you sit on his lap is ask what you want for Christmas. So Chance did not know what Santa was asking. We asked Santa if Chance could please sit on the other side of his lap, and Santa being Santa, of course he obliged. Then Chance could understand what Santa was asking and got to respond with his requests.

AND SANTA UNDERSTOOD WHAT CHANCE SAID!! Talk about empowerment! What kid wants to have to worry that he and Santa have not understood one another this close to Christmas?

Thursday, December 07, 2006

Chance is hearing like never before

Chance is hearing better than we ever thought possible when he was first diangnosed as being deaf. There may not be a lot of hard and fast tests that can measure the impact of having a second implant, but Chance is sure a living example of the benefits.
The other night at dinner, Chance and his brother each had half of a banana. Chance ended up with the biggest half and his brother exclaimed,"Ahhh, I wish I had known which one was bigger! Chance got the biggest one!" Then Chance who was at the other end of the table and looking down to peel his banana replied,"Mine IS bigger." Chance never would have just caught a phrase like that in the past.
Chance also felt brave enough to approach a woman who had played the guitar in church. After church as we were getting ready to leave, Chance said that he wanted to talk to the lady who had sung a song . So he patiently waited until a small crowd of people around her had cleared and then he told her that he saw her holding the "baby Jesus". (she was Mary). It took Chance a minute after he got to her to actually say something, but she leaned down and just waited for him to go on. This is also a big step for Chance. It shows that his confidence is growing and he is more certain that he can talk to people and they will understand him. Chance has always been a more social kid, but he would often hang back with adults and not say a lot. In the past little while I have noticed that Chance is initiating more and more contact and conversations with adults. And not just adults that he knows really well. He still holds back some, but he is gaining assurance I think each time he steps out and talks to someone and they understand what he is saying. And he is hearing more and more of what people say back to him. This must be a very satisfying experience for Chance to feel that he has the power to understand and be understood more often now.

Tuesday, December 05, 2006

How to have a heartattack in one easy step.....

Yesterday, Chance and I went to visit a class at the University of Utah to share our experience and talk about why we decided to have Chance use implants to hear. I was with a friend who was taking my other children to a McDonalds playland while Chance and I visited the class.
Not being that familiar with the U of U campus, I went to the wroing place....I got to the teachers office, but not to her classroom. We found a nice gentleman who showed me how to get across campus to the audiological lab where the class was held. It was too far to walk however, so I ended up calling my friend who had dropped us off to come back and get us in the van.
There is a lot of constuction going on at the U of U and you had to go up past the building where we were, turn around and then come back down. While I was on the phone talking to my friend as she made her way to the parking lot, she informed me that she was just right outside stopped at a light. She had to wait for tracks (light rail) also, so she said if we just ran over to the road, we could probably just pop right into the van while she was stopped. Oh, it was a good thought in theory, but just as we got to the van, the light turned green. I was telling Chance to hurry and coaxing him into the van as there were many many cars lined up behind us. Chance was not cooperating and kept fighing my efforts to lift him into the van. Finally, I got him in, then he started yelling, "MY IMPLANT! MY IMPLANT!" To my utter horror, when I looked at Chance's ears, one of the implants was gone. So with what seemed like thousands of cars behind us, I frantically scanned the asphalt around the van door and even looked under the van. But how long can you keep all of those cars waiting? Finally, after I could see absolutely nothing, I told my friend to just go and Chance and I backed up to the sidewalk to look for the implant. The van right behind ours then passed and I heard a crunching sound. I think my heart stopped beating right there on the spot. My mind flashed to the call I would have to make Chance's dad to tell him that the implant was smooshed on the asphalt of the U of U campus(this would be made even worse by the fact that Chance's dad is a BYU fan, the rival of the U of U).
It is never a good thing when children lose both of their parents at the same time because they both go into cardiac arrest. So as I stood gasping, and frantically looking for any sign of Chance's implant on the road, I looked to make sure that Chance was staying on the sidewalk. There, caught on the hood of his coat, was his dangling implant. I think I died and came back to life in that moment. OUR $80,000 SURGERY WAS STILL VALID! THERE WAS NO NEED TO REPLACE THE $4,000 EAR PIECE!
All I can say, is I believe in divine intervention and am very thankful for it!

Sunday, December 03, 2006

The second blog today..playing catch-up

Chance came up to me and told me a story that he just made up as he talked. This is amazing. It means that Chance is sorting through vocabulary as he talks as well as forming thoughts on the fly. It was a good story complete with a plot and a satisfactory ending too. I was thrilled to be able to share such a moment with Chance. At our house, we like to make up stories to tell each other. I am delighted that Chance is now finding a voice for his imagination. Chance even had great voice inflection...his voice got quiet during the build up, and had a loud punch at the climax of the story.

Chance has been bringing home journals from school where he has written about various things he has learned or was thinking about. It is really a precious keepsake. For Thanksgiving, Chance and his class looked through some cookbooks and then made up some recipes of their own. Chance made a recipe for Pumpkin Pie. We are willing to share this secret family recipe with you today so that it might become a favorite holiday tradition for you and yours.

Chance'S Choice Pumpkin Pie

Filling:
4 pumkins
2 cups of sugar

Crust
1 cup of flour
5 tsp. of salt
2 cubes of butter
3 cups of shortening
3 cups of water

Should you attempt this recipe at home, please contact us to let us know how it turned out for you. :)

Should you want more recipes from Chance's class cookbook, we will gladly oblige. We have a recipe for rolls that calls for 100 cups of flour. And a recipe for mashed potatoes that requires adding chocolate milk. Nothing like shaking up the old family favorites!

Saturday, December 02, 2006

Having a deaf child...behind the scenes.

Each child brings challenges and adventures to their parents' lives. Usually, as a parent, you can relate with other parents about your baby's sleepless nights, your son's procrastination when it comes to his chores, or even frustrations with the local school. I have discovered that this is not so with a deaf child. Other parents can not relate to you and what you struggle with. Unless you have a deaf child, you would not know what it is like, of course. I don't know what it is like for other parents who have a child with special needs, but when you are a parent of a deaf child, you are sometimes in a lonely place.

I can honestly say that I do not wish that Chance was not deaf, and that I do not see his deafness as a burden. Having a deaf child puts you on a huge learning curve and you are constantly encountering new territory. You work to find the best method of hearing for your child, then you seek out the best learning environment. You spend a lot of time explaining to people that deaf children can indeed hear and telling them that your child is capable. Just when you resolve one issue, another issue arises. For instance, I have been trying to be involved with Chance's school. It is two cities away and makes for about a 45 minute round trip. Twice now, however, I have been completely left out of the loop. At the begining of the year, the school had their big fundraiser and I bid on something at the auction. Before leaving to come home, I verified that I had not won anything, I was assured that I had not. After I got home, I got a call telling me that I had won something and could I come and pick it up. I told them that I did not live close by and could I get it another day. I have left 4 messages and have not received a reply.

Then they had an art contest at the school, and Chance turned in a drawing. After Chance forgot to turn his project in, I took it to the office. I never heard anything about it again. Then in the school newsletter, I learned that the contest is over, and we missed the displays and I have no idea where the art project is now. No one at the school even knows who we are except for Chance's teacher. When we do receive notices from the school, often the event has already occurred. It is hard to feel a part of something when you do not live in the area and have contact with the other people involved. Chance has friends at the school, but he can not play with them at any time other than school. I have thought that I should find out who the parents are of some of the kids in his class so that I can meet them and maybe have a play date. Chance has friends in the neighborhood, but he misses out on a lot here too. The other kids walk to and from school together, are in neighborhood carpools and can play together at recess. Chance gets home half and hour later than the neighborhood kids and needs a snack and a breather. By the time he goes out to play, the other kids are involved with games etc. Chance just tries to join in and the other kids are usually good to let him be a part of things, but Chance is always playing catch up.

When Chance does integrate to the neighborhood school, the kids that he has been attending school with through the School for the Deaf, will be dispersed to their neighborhood schools. So Chance will have lots of changes and will have to adapt to many new things. We are very grateful for the School for the Deaf and are glad to have Chance integrating in a regular school. It is just a lonely place to be sometimes when nobody around you is going along on the journey. And not only are they not on the same journey, they cannot comprehend the worries and struggles you encounter (and often they make no attempt to, or it doesn't even occur to them that they should). That being said, we have fabulous neighbors, without whom we have no idea how would have survived to this point, and fantastic teachers who genuinely care, and who help Chance and us a great deal.

Many people who have older children have told me things like, "Just wait until your kids are older and your life gets really busy! You'll be driving all over to football games, and piano lessons...it is just out of control!" It is surprising how many times comments such as this have been said to me. (I have pledged to myself that when my children are older, I am not going to go around telling moms with young kids how easy their lives are) These kinds of comments just solidify the feeling that you are alone. I am not driving to football games etc., but I bet I could hold my own if my schedule was compared to anyone with older children. I am driving to speech therapy, to help in Chance's classroom, to the audiologist to program the implants, to doctors appointments, two surgeries in the past year and various other meetings that come up related to Chance's deafness. Not to mention all of the normal doctor and dentist appiontments and the like. And I have other children that have their own appointments. I do not feel burdoned or put out by the extra appointments. I would quite frankly do anything to help Chance and as his mother, it is my job to do so. I like to be involved, and I find this journey a fascinating one. But I do feel quite alone sometimes as the journey I am on can not be understood by many other people. That is to be expected. But people also just don't realize what effort goes into helping these kids hear. I cannot imagine people telling a parent with a blind child, "wait until your kids get older and you have a lot to do!" And frankly, you get to choose to enroll in football, piano lessons, and other extracurricular activities. When you have a child with lots of doctors appointments, there is no choice. You do what needs to be done. But you are reminded every so often, that you walk alone on a path that those around you do not understand.

Monday, November 27, 2006

Things to be thankful for...

The more time that passes, the more I like Thanksgiving. It is a holiday all about family and friends and thinking about what you are thankful for. This year, we have much to be thankful for. We never could have imagined last year at this time that we would be where we are this year.
Chance came home and told me that the pilgrims came over on the Mayflower last week. Most kids his age could tell you that, but I think that Chance really knows and comprehends that this year. He is not just regurgitating facts given to him that have no meaning in his life. He is piecing together the world around him.

Chance is asking us more and more questions about the things around him. Why is there water there? Why is the sky dark when it rains? Being a child is all about asking questions and figuring out the things around you. Just because you don't have the ability to communicate with those around you, does not mean that all of the questions aren't there. I sometimes wonder how dark it must have been for Chance during some of this journey we are on. How many times did he wonder about things that he could not ask, or long to make himself heard and understood. I can not think about these things too hard as a mother or it breaks my heart. It must have been a hard load for Chance to bear.

Now though, we are getting to know more about Chance and what his likes and dislikes are. What he finds fascinating in this world. We always knew what some of his interests were of course, but for a while, there was also a lot of guessing involved. Before we found out that chance was deaf, we did not know why, but planning gifts and birthday celebrations was much easier when it came to Chance's brother. His brother could tell us what he liked and he could share with us his love of horses etc. When it came to Chance, we found ourselves asking."What would Chance want for Christmas?" or "What does Chance like?" Because of this, it is hard to describe the fullness in our hearts as we now listen to Chance talk about what he wants from Santa. Or when Chance tells us that he wants to play basketball. It is nothing short of a miracle. Even 6 months ago, we could not have imagined how much Chance would start to blossom. We are getting to know Chance better as he can let us in on his preferences and his desires. For instance, he has told us that he wants to be a runner. And he has announced that he wants to play the guitar while lots of people watch. This is a journey that we crave and look forward to sharing with Chance.

Sunday, November 19, 2006

"I know!"

Chance has started to get really frustrated at us sometimes if we tell him something a second time. He'll say in a very agitated voice, "I know!" Um....sometimes he doesn't know though:) He is catching on to more things than ever, and frankly, we are used to having to repeat things to him. So, we appreciate that Chance is annoyed when he has heard us and we repeat things. He probably notices that we don't do that nearly as much with his brother and sister. Chance does know a lot more often what is being said. But sometimes he has missed the mark. The biggest things he has a hard time with is words that have open and closed syllables but otherwise sound alike. Or words that sound alike except for the ending sound.

For instance, we were going to Chance's cousins birthday celebration a few weeks ago, and as I was calling the kids to the car, Chance asked me who the present was for. I told him it was for Kate. Chance wanted to hold the gift, so he took it from me and then started walking down the driveway. I called him back and told him that we needed to hurry to Kate's house. Chance to told me that he heard me, then, started down the driveway again. I called him back again, and Chance told me that he WAS going to Cade's house! Cade is a little boy that lives in our neighborhood. Chance got it after I clarified that it was not CADE'S birthday, but his cousin KATE'S birthday. I had to emphasize that it was his COUSIN Kate though for him to be able to distinguish the difference in names.

Chance is learning to tell the difference between the sounds, but it is amazing how many words sound alike. The differences are just subtle. It is kind of a miracle that any of us can hear as well as we do. Our hearing really is an amazing gift that is easy to forget. It just happens with out us really thinking about it. The process that Chance is undergoing to learn to hear is phenomenal. I learn so much just by observing him.

Wednesday, November 15, 2006

Drum Roll Please....

Chance was tested at the audiologist's office yesterday with both implants on. And with just the new implant on. It was an appointment full of discovery.
Some of the tests that were performed were:
Sound awareness test: For a given frequency, at what decibel does Chance hear sound. This is performed in the booth with white-noise (static) or a spoken 'ba-ba-ba', being delivered at a specific frequency and at a controlled volume. In the past, Chance would drop a toy in a bucket when he heard the sound; yesterday, he raised his hand (and for variety, he would sometimes keep his hand up, but open and close it)
Speech recognition test: For a given frequency, at what decibel does Chance detect spoken sound. This is performed in the booth, with the audiologist giving a common word (animal, cowboy, hotdog, etc), again through controlled volume, and having Chance repeat it. (In the past, and to other younger children, this is sometimes administered by the audiologist saying words and the child pointing to what he thinks she said in a book. For instance a page in the book might have pictures of a boat, car, bus, bird, bell and bread. The audiologist would say, "Chance, show me where the boat is." And Chance would point to the boat.) This is also sometimes performed by asking the child to “Point to your knee”, etc.
Now for the drum roll please......Chance did very well on these tests!

There is another test where they test all of the major sounds and sound placements of language (ie the 'b' sound at the beginning, middle, and end of a word). Before Chance got the first implant, he scored about 40% on that test. Yesterday, he scored about 70%.

Chance has had his second implant turned on for about a month now, and yesterday the audiologist told us that his implant is programmed at where it needs to be. To give some context, many times it takes months to adjust implants and find the right balance. The way Chance tested yesterday, indicates that he is getting about as much "volume" as he needs from his new implant. Now it is just a matter of maintaining the level that he is at now with minor tweaks and adjustments. So as far as the technical side of the implant is concerned, all systems are go. The implant seems to be giving Chance what he needs to hear. The audiologist was excited to see that Chance had come so far so fast. The first implant took a little longer to reach this point (about 2 months). We are told by several people that the time frame for both implants is quite amazing. We are quite excited about the whole process. Chance and his implants seemed to have bonded :)

Now comes the acquisition of speech, vocabulary and learning to hear.

Chance is behind his peers in language. For almost 2 years, he was profoundly deaf without us knowing it, and no one is sure just what language Chance had in his system before he got his hearing aids.. Then, Chance had three years with hearing aids which helped him immensely but, he was not hearing all that he needed to acquire language the way he needed to. Now, after having the implants, we have seen a BIG difference in what Chance can hear and comprehend. Now we need to build vocabulary. It is hard to know exactly what Chance missed. Hearing children just acquire so much vocabulary automatically from what they hear around them. Since Chance did not have that luxury, he does not have as extensive range of vocabulary that other kids his age do. We now need to help Chance gain vocabulary so that he can gain in knowledge and learn to read. Learning to read and having a good vocabulary base are directly linked. Chance is learning to read but he is hindered some by his lack of vocabulary. He is involved in a reading recovery program at school where he spends one on one time with a teacher helping him with reading. (We are very grateful for this!) And Chance is making a lot of progress. He continues to get better at reading, but vocabulary holds him back. So, his dad and I are having a crash course on vocabulary building. There is no formal training actually, just a will and desire to help our child acquire language. We work with Chance on what the teachers tell us to, and what we observe that he needs, and then try to come up with ways to help Chance "own" more vocabulary. Luckily, Chance is right on board with his own desire to learn. I am sure that all will not be smooth, but Chance is a smart little cookie with a drive to succeed. Chance's attitude and desire greatly helps our efforts. It will not be easy, and we are all on a learning curve, but I have no doubt that Chance will triumph!

Tuesday, November 14, 2006

THE Conference

Saturday was the big conference put on by the Utah Chapter of the Alexander Graham Bell Association. Those conferences always boost you up and teach you new ways to help your deaf children. This years conference was great. (Chance's Dad did a great job helping to put this conference together). It is always good to learn from professionals like Audiologists, doctors, educators, and other parents of deaf children. It really is a team of people that help these kids succeed. I am always impresseded with the dedication that people who work with deaf children have. Some of the go into the field because they have a deaf relative, or grew up around deaf people. But others just seem to be drawn to helping deaf children. whatever their motivation, we sure are grateful for them.

Having a deaf child is a continual learning process that stretches you and gives you insights that you would not get otherwise.

Chance's teacher at school is noticing a difference in Chance since he got the second implant. We are noticing things too, but when you are a parent and so close to the situation, you wonder if the differences you are seeing would be noticed by other people.

Chance localizes sound better. With one implant he would sometimes look up, down, and around before realizing where your voice was coming from. With the second implant, he tunes in to where the sound is coming from faster.

Chance also hears better in the van. This has always been a challenge, as Chance would want me to turn around and look at him when he did not hear me or understand what I said. Now, I find that Chance is catching things that I am saying while we drive. He will pick up pieces of the conversation even when the conversation is not happening with him. While he is still missing some (and maybe always will in the van), he is catching on to more than he ever has before.

His teacher has noticed that Chance is more focused when the class is sitting together during circle time.

We are noticing things even though having two implants is so new. It is exciting to watch and be a part of.

Sunday, November 12, 2006

Chance did a great job with his part...

So, today was the day of our big church Primary (children's) Program. Since I was one of the music leaders, I was more involved with putting the program on than your average Jill. For months the kids practiced songs that they all got up and performed today. I must say that I think it was a success. My favorite parts of the program were watching my kids participate, of course, and both said their lines with confidence. There was a very real victory for Chance as he got up in front of everyone and delivered his line. I think it is great when Chance has an opportunity to show people what deaf kids can do. They can be a part of the program like any other kid. I think several people were pleasantly surprised at Chance's reciting. He was confident, he looked out over the congregation and he spoke his memorized line while dressed like an angel. The angel Moroni to be exact. :)
Several people commented on Chance's part. Chance is blazing a trail. He is helping people to see just what he and other deaf children are capable of.

Chance took his line in the program seriously and would come up to me and recite it for me with a question in his voice to make sure that he was getting it right. He memorized it and clarified that he knew what he was saying and did not leave out any words. Many of the other kids did not memorize their parts, but it was very important to Chance to memorize his part and to say it right.

Another great result of the primary program was Chance's singing. The kids learned a new song each month throughout the year. Chance has had two implants put in this year. For a stretch after the first implant, he only had one hearing aid on for weeks. Then once the implant was on, he had to learn to hear again. I was worried that Chance might not know the songs and would stand up there surrounded by other children but feel like he was not a part of what was going on. However, during the past couple of months, the songs have been coming to Chance. He got to know the chorus of some of the songs, and he could sing parts of other songs. He is getting it! He may not have learned the song each month, but he had to put in a lot more effort than most of the other kids too. Chance is coming along and continues to put in the effort to get the job done!

Next year, I am going to put together a book of all of the songs that the kids will be learning for Chance. A book with the visuals that are being used each week. That way, he can have more time to learn the songs. I kind of did that this year too. With no scheduled surgeries, and two implants, I think Chance's abilities to learn the songs will only grow. Next year he will know more of the songs for the program and he'll just continue to increase his abilities.

Friday, November 10, 2006

Chance with a mustache in a taxi....

Chance is learning all kinds of vocabulary and is able to focus on learning more words now that he is hearing so much better. This makes us very happy!!!!

Chance has been trying out some of these new words that he is learning about. For instance, he told me the other night that when he was a daddy, he would be able to have a mustache and a beard and stroked his face. I told him that this was indeed true. Then Chance got to work making himself a black mustache to show his dad when he got home. Hmmm. Maybe a mustache is in Chance's future. He looks really cute with the two peice one that he tapes onto his face:)

Chance has been bringing home books to read to us each night. He is progressing with his reading but we have to work on his confidence some still. When he read to me the other night, he came to the word "taxi" and wasn't sure what it was. I asked him what it was again, and his head fell to the side as he said, "I can't do it!" I told him that he could do it, and then told him what the word was. It occured to me that Chance probably had no idea what a taxi is, so I asked him. He told me that he did not know what a taxi was. The word had no relevance for him. The book he was reading was talking about different ways that kids get to school. By bus, car, van, boat, walking, etc. I told Chance a story of when his dad and I had taken a taxi. This little tid bit of information helped him immensely and he read the book again, reading the word taxi. After we were done reading, Chance informed me that he wanted to ride a taxi to school. I told him that his bus driver would miss him. Chance shook his head and said "no". I told him that none of his friends would be in the taxi. Chance informed me that friends can indeed ride in taxis. So Chance's new ambition in life, is to ride in a taxi cab to school. There are not all that many taxes where we live (read: next to none). Otherwise, we could just let Chance have a little jont around the block in one. For now, Chance has riding in a taxi to look forward to in life.

Friday, November 03, 2006

To skate or date.....

I told Chance that his dad and I were going on a date tonight. He started gliding across the floor as if he were skating. "Skate?" He asked. "No, date." I said emphasizing the word date. "Skate?" Chance asked again. I could see in his eyes that he thought going skating was a great idea and he was ready and willing to go.

I said date again, and then Chance asked me what date means. I told him that it was when mom and dad went out together without any kids. I thought that was the end of it, until we picked up Chance at grandma and grandpa’s house after our date. Chance was sitting at the table and asked me "You went skating?" Again I told him it was called a date. Then Chance's dad and I emphasized the two words....."date and skate." Chance's dad asked Chance if the words sounded the same or different. Chance said that they sounded the same, so I got out a piece of paper and wrote down the two words. We showed Chance that one word started with "s" and one word started with "d". Then Chance got it. He chased me down the hall and asked me, "What is a date?" I told him again that it was when mom and dad went out together without any kids. Then Chance asked me what you do on a date. I told him that sometimes you went out to a movie, or out to eat or to the store..... Then Chance asked me where we went on our date. I told him that we had gone out to eat. Then Chance smiled and said "When I am a daddy, I can go on a date." I told him that was right and Chance skipped back down the hall satisfied.

Wednesday, November 01, 2006

The Limitations of Spiderman.

Chance was Spiderman this year for Halloween. The costume suited him. Chance got to march in a parade at school, have parties in his classes , all while looking forward to an evening of gathering sugary treats.

Right after school, Chance headed down to his dad's work so that he could trick or treat the offices there. This is something that the kids really look forward to. Plus, the employees provide the really yummy goodies:)

We went from floor to floor stopping at offices of people we knew, and enjoying the generosity of people we did not know, but who willing provided a sugar rush. As we headed back down to daddy's office, Chance got lost. We all filed into the room but Chance. The building is one of those that looks the same on all the floors, so Chance could have easily gotten confused. Chance's dad ended up searching 3 different floors trying to figure out where Chance had gone. There were so many people, and more than one Spiderman.

When Chance's dad brought him back, Chance's eyes were all red. Evidence that he had indeed been lost. Since Chance had a mask on, people could not see that he was crying. And, since he had a mask on, Chance could not hear as well either as both microphones on the implants were covered to an extent. So even if someone had realized that Chance was crying and tried to talk to him, he would have not heard them as well. Poor kid. It makes us realize that Chance is vulnerable and that simple things like wearing a mask, can block his hearing. Chance would not have asked for help I don't think. He tends to be independent and he was surrounded by strangers that he probably did not feel comfortable approaching. Sometimes I think Chance is used to being on his own to an extent because he has not had the language or the confidence in the past to ask strangers for help. This is changing though. Chance is reaching out to people he does not know more and more. But when Chance was lost as his dad's work, I highly doubt he tried to talk to anyone. He would have just tried to figure out where we were and go it alone. Thankfully, we found him rather quickly. It just makes us realize that in some ways, Chance is vulnerable and it must be very scary in his world sometimes when he does not feel he has the power the get what he needs.

The rest of Halloween was a hit though, and Chance has lots and lots of comfort food to help ease the trauma of being lost.

Monday, October 30, 2006

Why, why, why why.

It has not been that long since we had the first implant turned on, but I am already having deja-vu. Chance always has questions about things, but now he has taken the why questions to a new level. After the first implant, Chance asked me ‘Why’ about all sorts of things and now his favorite word is ‘why’ again. Why am I talking to Jaden? When I point out a police car at an accident, Chance asks me why the policeman is there. Who am I talking to on the phone he wants to know...and why. What is his sister doing, he wants to know. Where is his brother?

It is not lost on us that Chance being able to ask so many questions is indeed a blessing and we are very grateful to have a talking deaf child. We have learned new levels of patience as we answer what seems like 5,000 questions a day. Chance's younger sister has started asking why a lot too. So now, there are 10,000 why questions a day. "What are you doing?” “Where are you going?” and “What is that?” Are all popular questions with Chance also. But Chance is a smart little cookie and is just taking everything all in. He is trying to merge information that he already has stored with all of the new vocabulary and language that he is acquiring. He continues to utter new phrases and use new words that wow us. And he picks up on his teachers and friends common phrases:) I really like that his first pre school teacher taught him to say "Oh man!" That has now become a family phrase and Chance still uses that phrase on a regular basis.

Last night, Chance's cousins were all telling "scary" Halloween stories to each other. After a while, they all decided to come out and tell their stories to the adults. As the other kids told their stories, Chance came up and told me that he wanted to tell a story too. I thought this was a good sign as he was brave enough to tell the story in front of a room full of people. I could see Chance concentrating as he waited for his turn. He was thinking hard about his story. When Chance's turn came, he proceeded to make up a story about Skeletons, ghosts, haunted houses, bats, cats, and pumpkins. He had good voice inflection, and used his inflection to set the mood of the story. He would get quiet and whisper when he was building up to a big "Boo!" And his voice would get louder as he told us about the BIG monster that lived in the haunted house. We were so thrilled that Chance was brave enough to tell his story in front of everyone. And he did a great job. Chance’s confidence is growing and he is putting himself out in the world more and more instead of holding back as much. He has things to say and he is ready to start saying them!

As for progress with the second implant: Last week, one week after activation, Chance’s Dad did some sentence tests (from behind him, so he couldn't read facial cues) with only the second implant. Chance was able to identify most of the common phrases: "Where is ___?" "Who loves you?" "Where did you go today?" For "Where is the table?" he heard "Where is the temple?" For an uncommon sentence ("The elephant has big feet.") Chance had no idea what his Dad said. We wouldn’t have expected him to at this point, but had to test none-the-less. However, it was quite encouraging that Chance was able to identify some of the common sentences (even though not perfect) - it shows that his ear and brain are already starting to “accept” the implant.

Friday, October 27, 2006

Chance's response to the implant...

I am seeing a pattern with Chance. About the time that Chance went deaf, I had written in my journal about how Chance had become more snuggley. Then, when Chance got the first implant, he did the same thing. He just wanted more hugs and would cling a little longer when he hugged. Now, he is doing that same thing again. He gives a lot more hugs and likes to nestle in by me a little more often. I can't say that I mind. This is actually a fabulous way for him to deal with the stress in my opinion!

Chance is doing remarkably well. I do notice that he is a little more sensitive... quicker to become frustrated at little things sometimes. I think that he is just working so hard to adapt to all of the changes that he just needs a little extra lov'in. Today he melted my heart when we were playing a game together on the computer after school. He told me that he wanted me to sit right by him because, "I like you a lot."

We continue to be amazed at Chance's vocabulary. He is picking up SO MUCH MORE than he was with the hearing aids. His vocabulary is growing each day. He is able to express himself better and "catch" the words more often to get his meaning across. When Chance is trying to tell you something and he is searching for the words, you can almost see the cranks in his brain working. He shifts his eyes to the side, tilts his head, and says "hmmmmm..." as he searches his brain for the words he wants. Sometimes he even puts his finger up to his temple and taps it a bit. Chance is better able to find the vocabulary he needs to express his thoughts now. And he continues to just take things in stride. He just adapts to all of the changes that are occurring right now in his life. I can not even imagine the effort and energy that he must expend and has been expending for the last 5 months. He is learning to hear again, then learning to hear with two ears again, learning to read, mainstreaming in school, adjusting to social changes with kids in the neighborhood, learning social skills in a hearing world, learing new vocabulary, focusing on hearing and making out what sounds are........it sounds exhausting! Chance just amazes me. He is a little trooper.

Thursday, October 26, 2006

The wonders of technology...

Chance had his second appointment to adjust his new implant today. All went well and again Chance hardly ever said that the implant was too loud during adjustments. I don't know if the Audiologist believes Chance that it is not too loud more often, but we are keeping an eye on Chance to see how he does. Since our last visit, Chance has never told us that his implant is too loud. He just goes on with life as usual. In fact, the other night, Chance who usually hands us his implant as he heads off to bed, told me that he wanted to keep both of them on. So I just went and took them off after Chance was asleep.

One thing that Chance still struggles with is hearing on our regular phone. When grandparents call, they can call on the cell phone, but I am realizing that we have an issue with Chance calling to tell me where he is.

Chance is branching out in the neighborhood, which is really good considering that the two boys he regularly plays with are still quite fickle sometimes. He has been playing with some of the other boys in the neighborhood. The problem comes in the fact that the other boys live around the corner, and since I can not just look out to see Chance ,I told him that he needs to call and tell me where he is. We practiced today what should happen when Chance calls me from a friend’s house. I had him tell me what our phone number is, and then he wanted me to review how to dial our number. So I showed him that he would dial, the phone would ring, I would say "hello", and then he would tell me "Mom, I am at ------‘s house." Chance knows all of this, but he has not called on the phone as he has not been able to hear what is said that well. Our new cell phones allow him to hear but even our old cell phones caused issues. After our little review session, Chance got a big smile on his face and he left.

Sure enough, about 5 minutes later the phone rang. We have caller I.D. so I figured it must be Chance calling from his friend’s house. Chance did a great job of remembering to call and tell me when he goes inside someone’s house. However, I don’t know how much Chance actually heard.. He went through the routine that we practiced though. I picked up the phone and said “hello”. There was a long pause and I could hear an adult in the background telling Chance that I was on the phone now. I said “hello” a few more times, then Chance said “I am Cory’s house.” I said “ok” knowing that saying any more was not going to be heard anyway probably. Chance sounded skeptical but he kept going.”My other friend was not home.” I said “ok, have fun at Cory’s.” Then Chance’s doubtful voice said goodbye. Chance remembered the routine, but I don’t think he heard me hardly at all.

Over dinner, we asked Chance if he had heard me on the phone. He said yes. Then we asked him if he heard a lot or a little bit. He said a lot. But when we asked him if we needed to get a phone that helped him hear better, or just keep our old one, Chance enthusiastically told us that we needed one that helped him hear more.

This could be a challenge. What do we do, give Chance a cell phone? I can just see Chance’s older brother’s face as we tell him that we are giving Chance a cell phone. Plus, what kind of shape could a cell phone be in that belonged to a 6 year old? Not to mention that the phone would most likely be dropped in the irrigation canal, fall off of trampolines, skid off of bikes and generally get lost? I don’t want Chance to get discouraged and quit calling though because I need to know if he goes into someone house and where he is. Hmmmmm.

Some phones cause interference with the implant while others are fine. Each neighbors phone is going to be different. And we can’t very well go demand that they all go buy new phones that Chance can hear out of. So, hmmmmmm. This branching out thing is creating some interesting challenges

Sunday, October 22, 2006

Chance is learning the words to songs.

Chance has caught onto the chorus of one of the songs that he has heard in church for several months now. Chance knows bits and pieces to several songs, but rare is the song that he knows every single word to. Last week though, Chance delighted us by singing the entire chorus of a song that is sung in church as we rode in the van. He triumphantly told us that he sang the song when he was sitting in church. We had been visiting friends that week, so maybe it was the change of venue. Chance was so proud of himself. It is exciting to see Chance catch onto things and see his confidence build. I have no doubt that many other songs will follow now, and that he will be more like children who were not born deaf. Those kids can catch onto songs quite quickly usually. At least when they are 6 and are regularly exposed to the song. Chance loves to sing. He will probably always have to pay more attention to the songs that he learns and really try to learn them, but he is well on his way. Sometimes Chance would make up his own songs when we all sang a song and he didn't get all the words. Now, he can blend his voice in with ours more often.

Wednesday, October 18, 2006

Houston, we have a launch!


It is official! WE NOW HAVE TWO IMPLANTS INSTEAD OF ONE! Chance was really excited about getting his second implant turned on. Everything went really well at his appointment, Chance was a pro at throwing the blocks in the bucket when he heard a sound. And he heard all of the Ling sounds with his new implant today which is really good. (aaa, eee, uuuu, shshshsh, sssss, mmmmm).

The audiologist was working on getting Chance to tell her when the sound was too loud with the new implant, but Chance either hardly ever thought it was too loud, or did not understand when it was too loud. Chance had a sheet on his lap with a picture of a monkey looking swell and the word "good" under his image. The next picture over had a picture of a monkey holding his ears with the words "too loud" under his image. Chance only pointed to the "too loud" monkey a few times though. The audiologist kept asking him if it was too loud, but Chance just shook his head "no". So we are supposed to ask Chance this week if his implant is too loud at random moments to see if he can tell us anything. Right before we left from out appointment, Chance told the audiologist that "it was just right!" So there you go.


The process is the same as last time. There are 4 settings on the implant and we start out on program 1. After a few days, we go to level 2, etc. The goal is to be to level 4 by the next visit which is next week. If Chance complains of discomfort, we will hold off on moving the program for an extra day etc. Last time, Chance hardly ever resisted when we moved the programming up though so we'll see.

This is so exciting!! We have two implants! Sure, I know that it is really Chance that has two implants, but I am living my life through him as I will never get implants myself.(at least not that we know of yet:)

When we got off the elevator after the appointment, Chance said "I can hear that!" I don't know exactly what he heard, but he his face lit up at whatever the sound was. As we were walking out of the building, I asked Chance if he could hear with his other implant. Chance did not hesitate for a moment. He just nodded his head enthusiastically and said "yeah". The setting on the implant is quite low, so Chance is most likely not hearing like he does with the first implant, but I think he really likes having both ears hearing. He has had no problem keeping the new implant on, and is showing everyone he knows that he has a new implant. And not only that, but he has a "Halloween implant". It has a touch of orange. This implant came with colored plackets that you can change to make the bottom outside part another color. So, I am sure that we will be having a Thanksgiving implant with brown, Christmas with red or green and then we'll just go from there.

Since I had the camera with me from the appointment, I took a picture of Chance at school when all of his friends from his deaf class saw him. They were all impressed with the second implant and surrounded him to get a better look. Then all of them ran into class to tell their teacher that Chance had a new Halloween implant. Chance missed his mainstreaming class because of the appointment. But who knows. Maybe tomorrow, all of the kids in his mainstreaming class will wish that they had Halloween implants too.

Another thing that has changed from the first implant is that there is now a "mini" unit that goes over the ear. This device takes two instead of three batteries but does not allow for any plug-ins (FM systems, personal mics, personal audio, phones). It also has a rechargeable battery pack. We have one mini and one regular size unit as we get to choose two. After seeing the "mini" on Chance's ear, I would really like to get him one for the other ear as well. It just seems to fit more comfortably on his ear. (it only costs $1500.00 !) His right ear has adjusted to the bigger implant but it also kind of bends in a different way in order to make accommodations. There will be times when Chance will need the plug-ins that come with the bigger implant, but the mini looks more comfortable for now.

We are on an amazing journey with Chance. One that no one is real familiar with since Chance is one of the first ones in Utah to get a bi-lateral implant. We are all learning as we go along. Chance, us, the Audiologist, the doctors, teachers...it is an adventure to be sure! But we are excited to be able to on this path.

Tuesday, October 17, 2006

Chance can talk on the phone

Chance talked for about 5 minutes tonight on the cell phone. He was able to understand most of what was said and his Auntie Chris was able to understand him. We are quite excited that Chance was able to have this conversation. His Auntie Chris lives across the country so she does not see Chance very often. This means that what Chance said was quite clear because Chris would not just be used to being around Chance. You know how sometimes with a child the parents can understand things that others can not because the parents have learned to decipher what is being said? Sometimes it is hard for other people to know exactly what Chance is saying but that is changing. The fact that Chris could have a 5 minute conversation with Chance and tell him things like she was sending stuff in the mail, means Chance is really hearing and not guessing. It is difficult to anticipate what someone is going to say on the phone and you can not rely on lip reading to help you.

Being able to talk on the phone will really help Chance feel a part of things. He is always upset when his siblings can talk to grandma and grandpa on the phone and he can not. And it has been hard for him to watch as his siblings laughed or talked on the phone and then when Chance got on, he could not make heads or tails of what was going on.

Chance can hear on the cell phone and not the home phone though. I wonder what he will think when he suddenly can't hear the person on the other end because the phone cuts out? Will he clue in that the issue is the phone and not him?

Oh, and by the way, tomorrow morning (Wednesday) Chance gets his second ear turned on. We're excited to see how he reacts to having two ears again. Just like with the first ear, it will start low and slowly turn it up. We're hopeful that it will go quickly, as this second ear has been dormant for only four months. Also, since the audiologist, therapists, etc, have no experience with two implants, we're hopeful things go well. (For example, one of the tests is location - can the child locate what direction the sound is coming from. This is accomplished by having about 15 speakers about 12 degrees apart, and putting sound through one of the speakers. The problem is, we don't know if the audiologists even have the setup to do these tests.)

Wednesday, October 11, 2006

Chance passes wtih flying colors!!

Chance was tested this past week on his speech abilities. He is progressing so well!!

He could repeat back 8 word sentences. He could tell the difference between words like bat and boot and point to the pictures of these items. (So you can tell he was not just guessing). He could repeat back 4 numbers given in random order (3,6,9,2). He could hear whispering and differentiate between words such as hotdog, baseball and bathtub. (These words have the same beats.) We have seen Chance make great strides in his vocabulary and speech and now we have a professional telling us the same things!! When Chance had his hearing aids, sometimes he would guess what words were simply because he could tell the difference in the beats or he could guess the context. That still happens of course, but Chance is now able to take sentences that are arbitrary, where there is no context to guess what they might mean. The results of this test made my whole month! Chance is doing so well. He still does not hear everything of course. Nothing can restore natural hearing. But I am continually amazed at what Chance can hear. I can call down the stairs now to the family room and Chance will hear me even when the television is on down there!!

One of the biggest differences that I have noticed with the implant, is Chance's ability to really hear unknown words and repeat them back. When Chance had his hearing aids, giving him new vocabulary was difficult many times. He would ask what something was and we would tell him, but it was such a new strange word to him and he would not be able to hear it right. We would tell him the word, he would try to say it back and get frustrated when we kept saying the word again because he wasn't repeating it back right. With his implant, giving Chance new vocabulary is much less painful for all of us. First of all, Chance hears the words when you tell them to him. Second, he can focus more on the meaning of the words instead of trying so hard to say them right. Chance is ready for more advanced vocabulary too. Part of it is his age. But much has to be attributed to the fact that he just hears better. AND Chance has a great desire to hear and applies his force of will to do so.

Thursday, October 05, 2006

Oh, the strange things we learn...

It is funny the things that go on around us that we just seem to know about. We don't remember anyone telling us about them, we just seem to have always known.

The other day as Chance and I were coming off the freeway ramp to come home, Chance asked me what the yucky smell was. I told him that it was cow manure. Chance said "What?" So I told him again. Chance still did not understand but was determined to know what was assaulting his nose in such a way. So I tried to use a word I knew he would understand. I told him it was cow poo. Again, Chance said "What?" "It is cow poo", I replied. Chance logically wanted to know where the cows were. I told him there were no cows, just cow poo. So Chance asked me where the cow cages were. I told him there were no cow cages, that the cows did not actually live in the fields, but that the cow poo was brought to the fields. By now, Chance was highly frustrated so when we turned onto a new road, I pulled off to the side so that I could face him. In a very animated way, Chance said "Where is the cow cage?!!!!!" He signed the words cow and cage which is Chance's desperate way of emphasizing what he is saying when he is frustrated and does not think we are understanding him. So I explained that there were no cows or cow cages because the cows lived somewhere else and then people just brought the poo to the field to help the plants grow. I had to say that twice. Then Chance, who has a very expressive face, just sat and stared at me expressionless. It was if he was saying, "Are you on drugs? What is wrong with you? Why would you make up a story like that?" Chance just sat there staring at me like I had lost it for a while and then he said "WHY?!"

So Chance has just learned one of those things in life that we all know, except Chance might remember the exact moment that he found out that cow poo is used to help things grow.

Chance is also learning idioms at school, which is excellent. These phrases are also things that we all know what they mean, but we don't know why we know what they mean. While driving home the other night, Chance says to me "What does ‘hold your horses’ mean?" At first I thought that he was asking me because he had heard that phrase somewhere and wanted to know what it meant. But then he answered it by himself. He said "’Hold your horses’ means ‘wait.’" Then he asked me, "What does ‘piece of cake’ mean?" Then he told me that ‘piece of cake’ means ‘easy’. I am very grateful to his teacher for teaching him these phrases as honestly, it had not occurred to me. Yet these are phrases that Chance is going to hear all of his life and people will just assume that he knows what they mean. Can you imagine being a teen-age and not knowing what ‘hold your horses’ means? You would be so confused. Deaf kids do not just pick up on the things that hearing children do. They have to work harder at it. Sometimes when we are asking Chance what something means, we have to tell his brother and sister to stay quiet and let Chance answer. His siblings just know what certain things mean, while Chance has to think about it and sometimes he just does not know. Chance is amazing in his ability and desire to figure things out.

Sunday, October 01, 2006

To Hear or Not To Hear... That Is the Question


Yesterday while at the zoo, we attended a bird show. We watched talking parrots, zooming eagles, heart faced owls and hawks flew right over our heads. We sat on the first row so we had a good view of the show. The zoo crew who worked with the birds all had a microphone as we were in an amphitheater. I realized right away that this is not the optimal environment for Chance to hear in.

As soon as the show started, the tapping began. Chance tapping my arm asking what the man said. Chance tapping my leg asking what the man was pointing to. Chance tapping my knee to ask what his brother had said "wow" about. Chance tapped me no fewer than 15 times during the 30 minute show. Apparently, the speakers which were attached onto the top of the stage, did not give Chance what he needed. The volume was a little uncomfortable for me as it was so loud. I don't know if the volume was too loud for Chance and distorted things, if Chance needs to learn to hear in this kind of environment, or if the implant just needs another setting in such situations.
Chance so wanted to be a part of what was going on. He told me that he wanted me to tell him when it was time to raise your hand so he could help. They always call for a volunteer.


I did my best to translate for Chance. Some things were not in his realm like when the parrot and trainer were having a dialogue. The trainer would ask the parrot what is favorite song was...("I Left My Heart in San Francisco") I would tell Chance what was being said, but as was the case with the song, some things would have just been words to Chance with no meaning.

Last night however Chance started telling us words he was picking out from watching the television. He would say "I heard him say ‘home!’" etc. Sometimes he would repeat a whole phrase. So, it is still a little bit of a mystery as to what exactly Chance is hearing in some situations.

Chance has such a desire and he does not sit on the sidelines. He asks questions and taps you or turns your head to ask you questions about what is being said. I am grateful for his persistence. It is a great trait to have when one is deaf :)

Friday, September 29, 2006

Letting Chance Weather the Storm

I have just come inside the house. I was out helping Chance try to fix his bike. Alas, it looks like it is a daddy job:)
While I was outside though, I witnessed Chance trying to keep up with friends who were on their bikes. With the distance of the bikes from one another, coupled with the outside noises of kids at play, cars and environmental sounds, it is a difficult task to keep up with the conversations between kids. Add a bike helmet covering the implant, and the odds are not in Chance's favor to hear what is happening between the other kids on bikes. He misses who are the policemen and who are the bad guys. Or that the kids are going to take a detour up a driveway to pick something up. No, Chance is not a part of any of that. Chance rides along sometimes falling behind or going the wrong direction until he figures out where everyone else is headed.
These situations can not be helped and all kids have issues that they must learn to work through as they relate to other kids. But sometimes like today, you see a child taking advantage of the fact that Chance can not hear as well.
This is one of the hardest things about Chance being deaf for me. I do not resent the fact that Chance went deaf. I do not feel that Chance is a burden. But my heart aches when I see Chance's deafness being used against him. Sure kids are kids regardless of whether or not they have perfect hearing. We all have memories of less than pleasant childhood incidents involving other kids. As a mother though, I see Chance go along not letting his deafness get in the way and pretty much going with the flow. He just catches up to the other kids if he gets left behind or readily becomes the bad guy if the other kids have decided that he is the bad guy. But to watch kids whisper so that Chance can not hear etc. seems extra mean since they are taking advantage of his deafness.
Honestly, most kids are accepting of Chance and Chance loves other kids. I guess we'll just have to let Chance weather the situations where a child or two decides to use Chance's deafness against him.

Thursday, September 28, 2006

Music to Chance's ears

Chance has discovered music again through headphones. He has always liked music, and when he wore hearing aids, he would listen to music through headphones sometimes. He always took the hearing aids off first though. Then he would crank the volume and we would wonder if he was going to blow out any remaining hearing he might have. Now when Chance listens to music through headphones, he leaves his implant on. In fact, he prefers to have the implant on instead of relying on his own little ears. The other night when I checked on Chance in bed, he had found headphones and was listening to music. We had already put the implant away for the night, but apparently Chance had decided he needed it back on for his jam session. When I told him it was time for bed and that he needed to put the headphones away, and took his implant, he was not a happy camper.

I am glad to see that Chance seems to be enjoying music more fully again. Since Chance did not lose his hearing until he was about 14 months, I remember when he was a baby and would "dance" to music. Chance started to walk by 10 months and I remember him literally running down the hall when I would turn the music on in the family room. He would really get into the groove so to speak. The implant seems to be giving him some satisfaction that he may not have had with the hearing aids. So Chance, Rock on!

Wednesday, September 20, 2006

Chance is making friends at school

Chance's mainstream school (the regular elementary school that he goes to) had its annual fund-raiser this week which is a carnival at the school. Chance got a shot to dunk his teacher in the dunking booth. He missed but his brother nailed it.

While we were at the carnival Chance was approached by several kids who came up to say "hi". Chance also pointed out several friends to us though he did not always remember their names, we were encouraged by the fact that he did know many of the names. These were all kids that we had never seen before so they must have been kids from his new class. It was good to see that Chance is making friends in his integrated class. Chance has not ever let his deafness hold him back, but as a parent you have nightmares about the other kids not excepting your child because they are different. Although, I have found many kids are just curious. Many have never seen a hearing aid or cochlear implant before and are just not familiar with them. Once you explain that hearing aids and cochlear implants help people to hear just like glasses help people to see, they understand.

We still need to have our IEP (Individualized Education Plan) meeting with all of Chance's teachers, a representative from both schools, people we feel will help us discuss Chance's needs, us, and perhaps a few other people. We'll go over Chance's most recent testing and talk about where he is and what he needs to work on. We all sit down and have a meeting about what Chance's goals are for the year and what the expectations are. We actually should have had an IEP before school started to help ensure that we are all on the same page and we could voice concerns, but we do not live in a perfect world as we all know. This has been a bit frustrating for us though as the IEP is an important tool to make sure that Chance is getting what he needs and all of us who work with him know what the expectations and goals are.

Thursday, September 14, 2006

An Ever Springing Fountain of Questions

Chance continues to be an ever springing fountain of questions. He is still asking us, his family, what we are saying to each other. He now picks up more words by himself, but struggles sometimes to understand the entire conversation. He wants to know what I said to his brother as he got out of the van. Who I was talking to on the phone, and what I said about him when he hears his name.
On the other hand, he picks up on things quite naturally sometimes. Chance was sitting at the kitchen table playing with playdough with his brother when I walked by and said "I think you two are cute!" As I walked away, I heard Chance laughing and saying to Jaden," She thinks we are cute!" So I don't know what the magic formula is for Chance to catch entire sentences or thoughts. Chances vocabulary continues to grow by leaps and bounds and his expression of thoughts continue to amaze us.
Chance is so inquisitive and does not want to be left out of anything. He wants to know what me and his brother are reading about and why we are laughing. That is another thing Chance wants to know...why something is funny. He likes to laugh right along with us, he just wants to know why he should be laughing. Chance has a good sense of humor which serves him well.
We continue to ask lots of questions about how Chance is doing in school. We want to make sure that he is hearing what he needs to there. Chance likes school. He does not seem to be getting too frustrated though school was only in session for a week before we pulled him out for his surgery and recovery.
This will be a very eventful year for Chance between mainstreaming at school and getting another cochlear implant. It is too bad that he is too small to keep a diary. I would love to know what he is thinking.

Tuesday, September 12, 2006

When a mother calls....

Today Chance heard me call him from all the way down the hall and into his bedroom! It was one of those situations where I was rather tied down with the baby so I could not get up and physically get Chance. I thought it worth a try to call him just to see what would happen. Now, granted the house was quiet. All of Chance's siblings were reading or being read to, so no one was talking or making noise. But Chance wasn't expecting me to call him either, so my voice would have had to catch his attention even though he was involved in something else. And Chance does get reaaally involved and focused when he is playing cars, legos etc. So, I called his name. And then as I looked down the hall, Chance's little body came running out to where I was asking, "what?" Is that great or what?! I really did not think that Chance would hear me. I am delighted to report that he did hear me and look forward to more such instances.

On a side note, Chance got his finger hit with a hammer today in an innocent accident where he and his friends were cracking open "dinosaur bone" rocks with a hammer. As a disclaimer, I did not know that hammers were involved with play time, but thankfully, Chance lived. He just lived with a lot of pain. So now, Chance has a wound running down his head and a swollen, bloodied finger. Where is his mother?

Saturday, September 09, 2006

The unveiling....

One of Chance's friends from school brought him a superman cake, with a message, "Chance, you're our superhero!" Having a light-up superman on your cake always helps you to recover faster:)

Chance slept through the night - no more throwing up, no more real problems (which was really good - he would not have liked watching Mom, Dad, Brother, Sister eat his cake for him) . Mom and Dad tag-teamed sleeping by him to be able to help should anything have happened.

This morning Chance was a little more docile than he was after the first implant. He just wanted to lay on the chair. Later in the morning, he approached me as I was eating a late breakfast and told me happily that he could walk again. It is always good to be able to walk. Then Chance wanted his friend from across the street to come over and play and he seemed pretty much back to normal.

So we took the bandage off of Chance's head today. Well, most of it anyway. We unwound the turban of gauze that encircled his head, removed the gauze "bubble", and got down to the square gauze pad that actually touched the wound. And then we stopped. Chance was telling us that he wanted to lay his head down on the counter and so we asked him if it hurt. He said it did, so we stopped and gave him some pain medication planning to take that last piece off when the medicine kicked in. Then we turned on a movie for the kids and now Chance is sleeping. So, we'll finish tomorrow :)

The surgery is a success!


The surgery was a success today. Chance took longer to come out of the anesthetic than last time, preferring to saw some logs than to pay attention to any of us. And unlike last time, he has been throwing up some. Not a pleasant thing for him but he is taking it all in stride. The nurses and staff at Primary Children's Hospital are wonderful. They always treat us so well and take good care of Chance. Chance is now sleeping again. Hopefully tomorrow he is no longer feeling queasy. Thank you for all of the prayers on Chance's behalf - we felt like we were being watched over during the surgery.

Thursday, September 07, 2006

Twas the night before implantation...

Chance is so excited about getting an implant tomorrow that he is almost giddy. He had a hard time getting to sleep and has told us step by step what will happen tomorrow. He has also informed us that he wants to play video games in the waiting room and that he wants to be pulled back to surgery in a wagon. And of course, he has verified that once out of surgery he will be able to eat a slushee. They give them slushee's in the recovery room to ensure that the kids can hold down food before being discharged. There is also a television mounted on the ceiling so that as you eat your slushee, you can catch a good show or two. That is once you can open your eyeballs for extended periods of time. So, Chance has a plan and is ready to go!!
Chance's sister has verified that we will take the bandage off of Chance's head to see the big owie. Apparently that made quite an impression last time.

Wednesday, September 06, 2006

Time for Another One !! ( No - we're not pregnant )

We find ourselves in a situation that we never could have dreamed of when Chance was first diagnosed as being deaf. Three years ago when our journey into deafness began, we were quite frankly against cochlear implants. They seemed so permanent and intrusive. We were of the opinion that hearing aids were just fine thank you very much. Then came our real life testing of hearing aids. For Chance, the aids were not giving him all that he needed to hear. Right before we got approval from the insurance company for the cochlear implant, we found ourselves in a discomforting situation. Chance wanted to hear and had chosen to talk. He had made that very clear by never really taking to sign language no matter how much exposure he got. However, the hearing aids were not giving Chance enough hearing power. He was missing too much and we realized that this would only get worse with age. The cochlear implant finally being approved was a God-send. We finally had a direction to go instead of continually treading water as precious time for language development slipped by. Now, 3 months after getting the implant turned on, Chance is doing wonderfully well. His vocabulary and language continue to improve daily.
Due to the success Chance is having with the implant, one might wonder why in the world we would consider a second cochlear implant. After much prayer, study, prayer, research, prayer, consultation with people who have two implants, and prayer, this is our reasoning in a nutshell.
First, there is the argument that technology might improve and therefore offer deaf people something even better than an implant. Anything is possible. In our research, though, predictions of a better technology seem to be at least 10 to 15 years out (and that is optimistic). For a medical time table, this is soon. In the language development window of a child, this is years of schooling and life experience that you miss out on waiting. Something fabulous might be developed someday, but if Chance was held back by language and hearing during his growing up years, his life choices will have already been impacted. Also, from our understanding, there is no proof that if something fabulous does come along, that people with cochlear implants can not benefit from the new technology.
Second there is the argument that there is not a lot of research on how bi-lateral implants benefit children. This is true. There is not the same kind of proof of the benefits for bi-lateral implants as there are for one. Bi-lateral implantation has not been around as long. Europe and the East coast have been performing bi-lateral implants for years now and they have seen positive results. Plus, for me, it just makes sense that if all of us have two ears, there must be a reason that having two is better. If people go blind and medicine can improve sight, they are not told to only fix one eye in case something better comes along.
We have spent the past several weeks going to conferences on bi-lateral implants, calling people from all over the country who have two implants or are the parents of kids with bi-lateral implants and reading everything that we could get our hands on. This has been a gut wrenching decision for me. I spent a lot of time analyzing everything from how much a second implant was needed to what could go wrong. In the end, I just feel that it is the right thing to do for Chance.
People that we have talked to who have two implants, report a significant improvement in social situations and being able to relate to people in group settings. Childhood is one big group setting of school, church, t-ball, family, and friends. Also, adults who have bi-lateral implants that we talked to, said that having two implants greatly diminished their fatigue in group settings. After getting the second implant, the adults found that having one implant had been exhausting. They had had to focus so hard on who was talking in meetings and in groups that they left drained. After getting two implants, they found that they could actually take notes in meetings and are much more willing to engage in group settings. They also express that they appreciate music much more. Couple this with the scientifically measurable benefits, such as localization (identifying where the sound is coming from), better distance hearing, better incidental hearing (overhearing, eavesdropping, hearing when not actively participating in the conversation), and better hearing in sound-to-noise ratio (testing hearing when white noise is present).
Given all of that, our analysis of the situation is that Chance will greatly benefit from a second implant. We attended a lecture where statistics on bi-lateral implants were shown. Kids who have had some hearing before going deaf, (those not born deaf), seemed to fair better with bi-lateral implants. That would be our little Chance. In the end, we are basically helping to restore something that Chance had at one time but lost due to unknown causes at about 14 months.
So, pray for Chance on Friday as he heads into surgery once again. And, of course, we will keep you posted on how that goes and the adventure of bi-lateral implants!
Oh, and thank you for following Chance's progress and taking this journey with us.
PS - If you didn't fall asleep while reading this novel, we love you all the more :)

Thursday, August 31, 2006

Conversations in the raspberry patch.....

We found a raspberry patch in Mapleton (about 1/2 hour from where we live) where you can pick your own raspberries. So we took the family out to pick some berries. The kids had a great time, there were goats, a dog, yummy raspberries and a train even went by with a waving engineer. The atmosphere was great! But the highlight of the night was created by Chance. The raspberries belonged to a married couple who really seemed to enjoy having the kids around. After we had been there for a bit, Chance initiated a conversation with the woman who lived there. This is a great step for Chance! Chance really likes people but for a long time, I could see how nervous he was when people started talking to him sometimes because he could not hear them. And Chance rarely started a conversation with people he did not know well. Well, times they are a changin'!!!! Not only did Chance start a conversation with a woman he did now know, he also answered the questions that she asked him! My husband and I were like giddy teen-agers whispering to each other to listen to Chance as we picked raspberries.

School went better today for Chance. He told me that he made new friends. He just can't tell me what their names are. That is one thing that Chance seems to struggle with. He does not easily just catch someone's name he does not know. So sometimes as we are out and about, he will tell me, "There is my friend!" When I ask him what their name is, he just says "I don't know". So we need to work on that.

Oh, and apparently Chance can communicate effectively enough in the cafateria to barter away his nutritious lunch that his mother painstakingly packs each night. Actually, none of the healthy stuff really comes up missing (or even eaten, for that matter), but packages of chips, cookies and sugar drinks appear next to the neglected bananas, sandwiches, and yogurt. Maybe the other kids feel so bad for Chance and his 4 food group lunch that they donate to the cause. I wonder if I should start lacing twinkies with spinach or something to give the illusion of junk food :)

Oh - and the raspberries are delicious!!! They're going to make some __great__ jam and fruit-drinks!!!

Wednesday, August 30, 2006

Chance's first day of intergrated school...

Today was a rather heartbreaking challenge. Chance started school today, attending school with his hearing peers in the morning, and then attending School for the Deaf in the afternoon.

We had already been to the "big school" as Chance calls it to meet the teacher and look around. I showed Chance where the bathrooms were, and he pointed out the library to me.

We knew that today would probably be challenging for Chance as he adjusted to a bigger class than he was used to and with kids who all could hear. (He does have 2 other deaf kids in his class - two of his friends that he has attended school with for 3 years now). Wishing to make this transition as smooth as possible, we tried to prepare Chance. We went over his schedule with him... that he would go to the new class in the morning, have lunch, and then go with the teacher he had last year. We told him how fun it would be and made one of his favorite breakfasts and read stories before Chance left for school.

Then this morning I got a phone call after school had been in session for about 10 minutes. It was the school informing me that Chance could not attend school because they did not have his paperwork. We had turned in Chance's paperwork last week, so I was confused. To make a long story short, the school had misplaced our paperwork and not gotten the fax that our doctor had sent over with Chance's immunizations. They found the paperwork after I told them that we had indeed turned it in last week, but they could not find the immunizations. So we had the doctor fax the record over again. They did not have a copy of the birth certificate, but we were told last week that they could call and get a copy from the district, who already had a copy on file, so we were ok. The school did not call the district though, and since they decided this morning that Chance couldn't go to class without it, the teacher over at the School for the Deaf ran over during her lunch and got a copy from the School for the Deaf, who also had one on file. (bless her!) Sigh. Needless to say, we were highly frustrated. This was Chance's first day of school and we wanted it to be a positive experience, but instead when he got there, they would not let him into class. Chance was instead taken to the kindergarten class of the School for the Deaf. He told us after school that he could not go to his class because he did not have a paper for the teacher.

The hardest part for me, is that Chance's feelings and experience became secondary in the whole process. No one even seemed to consider what this day was like for Chance. It was all straightened out, but it bothers me that Chance was not let into the classroom. He missed all of the introductions. Chance missed the first hour or so of class when all the kids are adjusting and figuring things out. And Chance will not just be able to catch on to verbal cues the way the hearing kids will. He missed things that he will not know and yet still be held accountable for. I don't think the school meant to be mean, but I don't think that they understand how hard these deaf kids have to listen and how imperative it is that they see what is going on. It is hard enough coming in late and trying to catch up if you can hear everything. It is doubly hard if you come in late and try to catch up in a new environment while working so hard to listen. When you are deaf you don't have the luxury of catching what is going on around you like do if you have regular hearing. I have watched Chance listen. It is amazing the concentration that he puts into it. Chance missed things that he will now be trying to figure out for the rest of the week. Chance did not understand what was going on. I know that mistakes happen and that the first day of school has challenges. But my son did not understand any of that. All he knew was that he was not let into class because he did not have a paper for the teacher.

So, here's to hoping that things just go up from here. Like I said before, I just hope that Chance feels a part of the school and that those around him see the great little boy that he is. I think that this is the period for awareness and that Chance and his peers are leading the way. These kids are so capable and so smart and willing to learn. We just have to make sure that they are let into the classroom for this to happen :)

Tuesday, August 29, 2006

Chance starts school...


Tomorrow Chance will begin school. It is the first time that he will be integrated into a regular classroom. I have noticed many emotions coming to the surface. We had our meeting with the teacher a few days ago. She has never worked with deaf children before but seems willing to learn. My one main concern is Chance catching and understanding what happens in class surrounded by 25 other kids. For instance, what if the teacher tells everyone that it is time to sit on the floor and all the kids start closing their books, shuffling in their chairs and making other noises and through all of this, the teacher keeps giving instructions? Chance will not hear what is going on. My biggest fear is that Chance will end up following the crowd, watching while the other kids get in line while he wonders where they are going. Or Chance will miss the one word in the sentence as the teacher writes on the board and doesn't understand what he is supposed to be doing as the other kids get out their pencils.

I don't mean to sound pessimistic, but the fact is, these things are likely to happen. I just hope such situations are the exception and not the rule. As a mom, it is so hard to watch your child struggle. When we went in to meet Chance's teacher, she took Chance over to a table in the opposite corner of where I was. She told Chance that they would play with a truck (which was sitting right there), but first they would talk. Chance missed the last part of that sentence so he joyfully bent down and started playing with the truck. Then the teacher told Chance that first they were going to the table. Chance looked confused. When Chance still did not go to the table, the teacher sternly told Chance that they were going to the table first. I saw the look of confusion pass over Chance's face as he wondered why the teacher looked like she expected him to do something, or why she had said he could play with the truck and now he was chastised for doing just that. Chance had heard play with the truck.

Later, the teacher told Chance to pick something. Chance is not familiar with the term 'pick'. He knows 'choose', but not 'pick'. I thought to myself, as I watched this interaction, "I need to work on vocabulary with Chance." But what vocabulary? I don't know what terms the teacher uses on a regular basis. And will the teacher catch on that maybe she needs try to again with Chance if he does not get it? Repeat the sentence, use different words, etc? Will it occur to her that maybe Chance does not understand one of the words she has said? I told the teacher that if Chance looked like he did not understand her, or if he did not respond to her, that he probably did not hear her. Will the teacher have patience with my little boy who really wants to please, but sometimes just does not hear things the first time? Or will she just think that he is being belligerent, or purposefully ignoring her?
I forgot to tell the teacher that Chance needed to be seated on the left side of the room so that his right implanted ear will be facing the chalkboard. Will the teacher think about this? I'll call and tell her tomorrow. I don't expect the class to revolve around Chance. But I earnestly pray that his teacher has patience, common sense, and most of all, an affection for my son so that she can tune in if Chance is not hearing things and gets lost. Yes, Chance is capable of this. The question is, will be be given the opportunity to do it in a way he understands.

Chance will have to work harder to hear than the other kids in his class and he will be following the cues of the other kids, especially at first. So I also pray that the other kids will accept Chance as a peer and that Chance will feel included. I am turning over my sweet little son to other people that I hope will care enough to work with him and see what a wonderful, bright little boy he is.