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

4 pumkins
2 cups of sugar

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 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.