Chance is famous!

Chance's picture is splashed across the front page of section B of the Tribune Newspaper today. The paper was writing an article about identifying hearing loss in children early, as a result of a panel discussion/press conference at the national press club in Washington D.C. yesterday. A reporter from the Salt Lake Tribune wanted to write an article about early detection of hearing loss in children. One of the talking points of the press release was that many babies/children who get a hearing loss diagnosis don't get the follow up care that they need to utilize the available options. The reporter wanted to talk to a family of a deaf child who did not get the services immediately. Someone from A.G. Bell called our house to talk to Chance's dad since he is currently president of the Utah A.G. Bell Chapter. They got me instead:) Since Chance wasn't your typical diagnosis, the reporter called and wanted to interview me. Then later a photographer came to our home and took some pictures of Chance. Chance showed his friends at school the paper. It isn't every day after all that one is in the newspaper.

The newspaper article was not just about Chance, but about kids getting the help they need when they are diagnosed with hearing loss. There are so many dedicated people working on helping these kids at both the national and state levels. I have been impressed with the work and energy that many of these professionals put into getting children with hearing loss the help that they need.

The work to help these kids and their families is so important. The technology is here to help these kids with hearing loss and deafness get what they need. I am grateful for opportunities like the newspaper article that high light the need for awareness of hearing loss which is the number one birth defect in America. I had no idea this was the case until I got into this world of deafness through Chance.

I have great hope for the future of children diagnosed with hearing loss and deafness. I have great hope and confidence that Chance will be successful with his implants and be able to live his life able to do anything that he wants to do. Chance was tested in school for the end of the school year. He is still 2 years behind in language, but that gap will close over time. Chance is thriving with his bilateral implants and amazes his teachers, professionals and his parents:) with his progress.

We are very grateful to all of those dedicated people who are working to help children with hearing loss. Many work behind the scenes and are never given acknowledgement as being an important part of getting deaf kids the help they need. But we know they are there and are more thankful for them than we can adequately express.

Having a deaf child affects everyone in the family..

Having a deaf child in the family affects all of the other kids as well. My kids have all been little troopers and learned how to occupy themselves in small quarters with creative entertainment options. One of those entertainment options seems to be having to use the restroom frequently when we have been at an appointment for an extended period of time:) Though, I have learned from my daughter that pointing the air dryer down the back of your shirt, does make you warmer on cold days:) And for some reason, commodes in many hospitals sound like a jet liner taking off when you flush them. So, when the excitement in the patient room wears thin, there is always the bathroom to use for entertainment.

We have a game that we play where we take turns hiding a penny in the room for the others to find. We have also acted out stories such as "Goldilocks and the Three Bears", and have put blown up surgical gloves on our heads so we look like chickens while waiting in various rooms for doctors or other professionals.

It is a delicate juggling act to make sure that all of the appointments and time spent at home, that is needed to ensure that your deaf child gets what he needs does not leave the other children feeling slighted.

My kids are still young, so they don't really know any different. I have talked to other parents with deaf children whose children are older, and resentment can develop. The siblings of the deaf children comment on how much more time mom is spending doing things related to the deaf child. Some parents even report that in moments of frustration their non deaf kids will exclaim, "I wish I didn't even have a deaf brother/sister!"

Having a deaf child definitely impacts the entire family. I'm sure that families with any child requiring special or additional care face the same frustrations. The whole family is affected by all of the appointments and extra attention that parents need to pay to the deaf child. There is a window of time to get language in and you have to maximize that time.

Although, it can add some extra strain at times, I know that having a deaf child can also strengthen a family too. My kids are usually very sweet together and people have commented on how Chance's siblings look out for him and make sure that he knows what is going on.

We do try to make sure that the other kids get the time they need too. Sometimes that means holding a tea party for the neighborhood girls at our house or all of us driving in the car while a scout sells Scout O Rama tickets. And sometimes it just means taking an afternoon off and letting the kids just play and have a free afternoon. We have found that even little week end getaways as a family can have very good effect. (It’s good to have family in St. George :) ) A week end away with no appointments and no daily schedule. Just time to play with the kids and spend time with them.

I don't feel that having Chance has created a big hardship for out family. On the contrary, he is a great blessing to all of us, and we wouldn't trade him for anything. He is a light that brightens our days.

I just want to be careful so that my children don't start to wish that they didn't have a deaf brother.

I overheard my oldest son telling a friend yesterday that he is tired of always going to people's houses while I am at appointments. I am trying to be aware of the needs of my other kids and choose carefully what I commit my time to. We explained to my son that we knew it was hard and we appreciated all of his help. We also tried to explain that we need to put extra effort in now so that Chance can learn how to hear with his implants and acquire language. By doing this now, we hope that Chance will get what he needs for later. Our son seemed to take it in stride, but I know that it is not easy for him.

We are really trying to be aware of the impact all of the hustle has on the family. I am looking forward to summer when I plan on giving the kids more carefree time and we have some fun family activities planned.

I know that our family has learned many things through having a deaf child. I have great hope that we can find the right balance and all come out stronger for the experiences in the end.

Speaking of dinosaurs...

"All of the dinosaurs ran and hid when they saw T-Rex coming, but not triceratops. Triceratops stared at T-Rex. He was not going to let T-Rex scare him."

That is how the story went that Chance read to me yesterday. We had a great discussion about the story and Chance even wrote down a summary of what the story was about. When Chance showed me his writing book, it said: "Triceratops stare T-Rex."

I asked Chance if something was missing in the sentence. He said no. I helped him see that stare should be stared. He then changed stare to stared. Then I asked Chance if something else was missing. He thoughfully, studied his sentence and told me no.

I then asked Chance which sounded right:"Mommy stared at Chance." Or "Mommy stare Chance." Chance said that the second one sounded right.

I explained to Chance that the word "at" needed to be in the sentence to make it sound right. So Chance changed it.

Later at dinner that night, Chance's dad (who had been apprised of the earlier conversation), asked Chance what happened in the story with the dinasaurs. Chance said that Triceratops SCARED T-Rex. Ah hah! We showed Chance that the story said STARED instead of SCARED. Then Chance's dad asked him if he knew what stared meant. Chance said no. So we taught him what stared meant over dinner, partly by playing the staring game (which is hard to win when you wear contacts).

Now, Chance's original sentence makes sense! Triceratops scare T-Rex. Sure it needs a 'd' at the end, but Chance must have been really confused when I had him to add the word"at" to his work!!

Scare and stare do sound awfully alike and both would work in the context of the story.
Apparently, we need to ensure that Chance understands exactly what the word is when he is convinced that he already has it right:)

Chance just gets better on the phone

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

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

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

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

Heather Whitestone

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

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

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

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

Chance tells us about people who cannot hear..

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

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

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

A strangers observations...

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

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

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

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

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

Chance hears the kids hiding while playing hide and seek

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

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

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

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

Chance uses phrases other kids his age do...

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

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

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

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

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

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

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

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

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

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

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