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.