IMPLANTS, IMPLANTS, EVERYWHERE!

So, it has been a while since I wrote anything on the blog.......that is because we as a family were at a camp for kids with cochlear implants and their families. It was great to see so many kids with implants and see how well they were doing!! It is always nice to see deaf children who are older than Chance so that we can see what the road ahead might look like.

We all made great friends at the camp and learned a lot. Cochlear implants have come a long way since they first came about. They have more channels and allow the user to get more out of their hearing. It was good to talk to other parents who are going through the same things that we are with Chance.

Although technology has come a long way for deaf children, the public perceptions of what these kids are capable of is still limited. People who are studying deaf education in college RIGHT NOW, are being taught that cochlear implants cause the kids continual pain and that they can not swim or shower! They are also being taught that kids with cochlear implants will never feel a part of either the hearing world or the deaf world, that they will be shut out of both. That is not what we have witnessed. We have seen kids interacting with their hearing peers and able to be a part of their own neighborhoods, church groups and community sports teams. When I tell people who are unfamiliar with deafness that my son is deaf, I have had questions like "Does he use braille to read then?" Even after I explain to them that Chance has a cochlear implant and that he can hear, people will tell me that they don't know sign and talk to me so that I can talk to him. At the camp, other parents expressed that even people that they had lived around for a year and a half would ask if their son could hear things. One of the camp counselors, who is studying deaf education herself, admitted that what she witnessed at this camp essentially contradicted everything she had been taught in college about cochlear implants and deaf kids and their ability to hear and talk.

The general public has virtually no experience with deaf people who can hear. I feel like Chance and other deaf children are blazing the trail. In 10 to 15 years, I believe that there will be more awareness about deafness and more deaf people who are in the mainstream of society working and socializing just like any other person does. Right now seems to be the time of awareness, when kids like Chance will show people just what deaf people are capable of.

Live and learn

We learned another important thing today. Not only should we put batteries for the implant in the car, but also in the diaper bag or some other thing that we will always have with us:)
Tonight was pack meeting for Chance's brother who is in cub scouts(and Chance's dad who is the cub master). Pack meeting was held up in the canyon. It was a lovely place to have a pack meeting really, but Chance's implant died just as he arrived. And since we hiked in, going back to car was out of the question. WHAT ARE THE ODDS OF THE IMPLANT BATTERIES DYING JUST AS CHANCE GETS TO THE CANYON?! The diffuculty is, little boys think forests and hills and paths are great places to explore. And they are. But since Chance could not hear us if we called him back, we had to regulate him to our little camp spot. All it would take is for Chance to wander off, get lost and we would be hard pressed to find him since he could not hear us call. Chance was pretty good at sticking around, though he did go to the outer most edges of the camp spot.
I am glad to report though, that we as parents are getting smarter. We are going to put batteries in the diaper bag. And maybe my purse, his dads wallet, his siblings shoes and tape some to the baby stroller. Apparently, one can never be too prepared when it comes to implant batteries.
Chance heard me call his name today while he was engrossed watching television, with kids running around the house, and me standing over in the kitchen! I had actually started walking towards him as I called him thinking I would have to get closer for him to hear me. It was wonderful to have his little face turn to me and say "what." I don't think I will ever take hearing for granted again after living with Chance.

Water, where not hearing is inevitable...

Seeing as it is summer, we have had numerous occasions to take Chance swimming. Of course, Chance can not wear his implant in the pool, so his is a quiet world while swimming. For him, the pool is splashing and diving and testing out his swimming skills. For us as parents, the pool is an occasion to test our visual skills as we keep track of Chance whom we can not call out to. (I usually wear contacts but take them out to swim. So, Chance and I are a good pair:)

Thankfully, my eyesight is not really bad. I can see things without contacts, I just can not make out faces clear across the pool.

It is really not bad taking Chance swimming, you just go on high alert as a parent as talking to your child takes on a whole new meaning when they have to look at you to communicate. (Hard to do when one is diving).

The funny thing is, you call out to your child automatically. You have to constantly remind yourself that your child can not hear you. (You also have to inform the life guard who is yelling at your child to quit running).

The shower is the same situation. Chance wants to know what we are saying if we talk to each other as he showers. He does not want to be left out. We can't blame him. It is just funny to talk to Chance's dad and have Chance knock on the shower window, press his face to the glass and ask what we are saying.

What a difference the implant makes!!!

We learned a valuable lesson yesterday. We need to put batteries for the implant in the car. We usually had extra batteries for the hearing aids in the car, but we neglected to put batteries for the implant in the van.

Chance's uncle took the kids to a movie yesterday. I dropped Chance off at the door to meet his uncle and before I could pull away, Chance was back handing me his dead implant. What are the odds that the implant would die right then? It was unfortunate for Chance since he would not have optimal hearing for the movie, but good for me because if the implant had died in the theatre, Chance may have taken it off and forgotten to bring it home. I leaned out the car window and called out to Chance's bewildered uncle (Chance's uncle had taken 4 other kids to the movie as well) that Chance would not be able to hear much as his implant was with me. Chance would still enjoy the movie; he could hear some things since movies are so loud. And frankly, Chance had been mostly just watching what happened during movies for most of his time with the hearing aids. But Chance would hear close to nothing that his uncle might say to him. :)

After the movie, we all met at Chance's grandma's house for a family get together. It made me realize just what a good job the implant does to help Chance hear. We all had to adjust to the fact that Chance could really not hear much at all especially with all of the noise that accompanies a large group of people. We had to resort to tapping Chance to get his attention and he had to look right at our mouths in order to have a prayer at getting anything that we said.

Chance didn't seem to mind too much, but we had to make major adjustments. There was no calling out to him, and Chance had to rely on watching us to know when it was time to eat, go swimming, or get in the van. Chance also asked lots of questions as he did not just hear anything that anybody said and had to clarify what we were doing.

Having Chance's ears "al-natural" made us realize that the implant is a good thing for Chance. With the implant, he can be more apart of family gatherings and know more about what is going on around him. The implant gives Chance more control over his environment. He can be apart of what is going on around him, instead of having to react to things after they have happened.

Now I better go put some batteries in the van.

Chance wants another implant

Chance was sitting on my lap last night, when he told me that he wanted another implant. I asked him why. He told me, "Because." I asked him, "Because why?" Then his face kind of fell and he pointed to his left ear and said, "because I can not hear in this one." His face and tone of voice conveyed a powerful feeling to me. I have not been through what Chance has been through, nor have I experienced what it is like to have to try to hear everyday. As a mother, though, you have such a deep connection to your child and feel their angst, pain and joys in a way that few other bonds allow. I thought "Wow. What must this be like for you every day all day long?" "What are you hearing?" "What do the things going on around the both of us sound like to you?" "How much do you struggle to hear?"

We were told that Chance should wear a hearing aid in his left ear after he had adapted to the cochlear implant. No one has mentioned that the time was right to use the hearing aid again though. Chance has pointed out that none of his friends wear a hearing aid in the ear without an implant. (Peer pressure rears its head!) We are not sure why the other kids don't wear a hearing aid. (Maybe this would be our first chance to use the classic parental line of "If your friends jumped off of a cliff, would you follow?") Chance has not said that he will not wear a hearing aid in the other ear, he has just informed us that no one else does.

Blue birds, Parrots, and Sea Gulls

I continue to be amazed at what we who have always been able to hear take for granted. I watch in amazement as I realize that there are several words that Chance is just now picking up. He tends to generalize things. For instance, all birds have just been, well, birds. We are now working on letting him know, that there are blue birds, parrots, sea gulls, etc.

The other night in the kitchen, I asked Chance to get me a paper towel. He looked kind of confused, so his dad repeated the question. It looked like he might just be ignoring us, but then I noticed that he was scanning the countertops with his eyes. I told his dad that I didn't think that Chance knew what a paper towel was. Once his brother pointed out where the paper towels were, Chance gladly got one for me.

My other kids just pick up vocabulary so easily compared to Chance. Chance has had to work a lot harder on understanding the names of the things around him. When you tell Chance the name for something, he usually repeats it back to you and he does a pretty good job of remembering. We just need to remember to use the new vocabulary with Chance to help him retain what he learned.

We are also working on 'his' and 'her'. Chance has not picked up on those little parts of speech that a hearing child his age would have. I could see his little mind churning when I explained that you use "her" when refering to girls and then used it in a sentence. A few minutes later, Chance verified with me about using "his" and "her".

Chance is eager to learn though, and I know that with time, he will get it all sorted out. I am so proud of him for all of the effort that he puts into hearing and speaking. I can not even imgine what it would be like to have to concentrate so much to pick up things that others just get due to normal hearing.

I was sitting on the kitchen floor doing a puzzle with Chance ( Chance is VERY good at puzzles ) when I called out to his sister who was down the hall. I was drumming out a beat on my legs at the same time to some music. After I had called out to Chance's sister a few times to join us, Chance told me that it was too loud. I smiled and stopped drumming on my legs. "It is too loud when I hit my legs?" I asked. Chance smiled back and told me that it was too loud when I called to his sister. What a refreshing comment coming from Chance!
Chance is doing so well. We are so pleased with his progress and know that much of that progress can be credited to Chance. Chance is a little trooper who knows what he wants and doesn't let anything hold him back. He just keeps plugging along, asking questions and continually trying.

The dynamic of 3.......

Chance has several friends in the neighborhood, the little boy across the street is his best little pal, but the boy at the end of the cul-de-sac has been coming over almost daily now. Lately, these two boys and Chance have formed a little threesome and have been playing together. This has created an interesting dynamic. Chance's two friends obviously can hear so they have no problem understanding what the other one wants to do or is planning. Chance is doing better each day, but he still has to try to understand what is going on around him and does not catch all of the conversations that just occur among people.

Though Chance takes it all in stride and does not seem to be phased, I have noticed he seems to be frustrated sometimes when his friends do not seem to understand what he is saying. And I have watched as Chance has to run to catch up to his friends because Chance has missed the message that they were planning to go outside now. Chance takes it all in stride, he just runs and catches up. It is hard to watch as his mother though. I understand that Chance will never hear as the other kids do and it is great that Chance just compensates by running to catch up etc. The real heart breaker for me though, is when Chance's friends are just being kids and whisper knowing that Chance can not hear it. Or when his friends dash off after Chance has not agreed to do what they want, knowing that Chance is too far away to hear if they quietly plan to leave. It is all kids being kids of course. My head knows that but my heart does not follow such a rational train of thought. My heart feels a sting of anger as the kids purposely use Chance's deafness to their advantage when they don't get their way etc.

Chance is not perfect of course. I know that he gets frustrated when they don't seem to understand and lashes out by parking his bike in the path of his friends trying to get them to listen to him. It will not be the same for Chance as it is for the other kids. He will not easily get the social cues that the other kids don't have to even think about. And Chance does not seem to be aware that he is being purposely left out through whispering. I can not run up and tell the kids how mean they are or how wrong it is to take advantage of someone’s deafness (though I want to sometimes:) I will stand up for Chance when it is appropriate and beyond what a 6 year old should have to stand up for. But Chance has to learn to deal with other kids and their childish games that they all play. Thankfully, for now, Chance does not realize that his deafness is used against him sometimes. He is just a kid having fun with his friends. And he is used to compensating when he misses a cue to go outside etc.

Honestly, the two little friends are great boys. They are more likely to stand up for Chance and make sure that he hears them than to take advantage of his deafness. And most of the time, they all just play with out a problem. It is just a hard thing being a mother all full of love for your child and having to watch them go through the hard knocks of life. Especially when you know this is the beginning of a path your child will have to learn and that you will not be able to protect their feelings and perceptions forever. Chance's deafness will give him a different experience than most of us have had growing up. No matter how good the technology is, Chance will always be deaf and susceptible to others taking advantage of that when it benefits them. Though, I honestly believe that most people are good and won't try to hurt Chance. There is frankly no excuse for an adult that manipulates the deafness of another for their advantage. But an adult can see that. The playground politics is something that we all must weather. For most of us though, it is on equal grounds. Chance is in the innocent phase still, not understanding fully that his deafness makes him different. He will have to learn to advocate and stand up for himself. For at least some of those learning experiences there might be a mother hiding in the shadows, praying for Chance and resisting the urge to run out and give some kids a good licking!

Chance is gaining confidence

One of our neighbors told us that she is understanding more of what Chance is saying. This is great!
We also have new neighbors that just moved in. We had them and another new family in the neighborhood over for homemade ice cream last night. The family who moved in next door, lived near by and made regular visits to check out the progress on their new house. They have kids our kids ages, so when they would come check on the house, our kids got to know their kids. They have all been friends for months now.
As we visited last night, our neighbor told us that when they first started coming to see the house, Chance would not say anything to them. She said as time went on though, Chance became more comfortable and would talk around them. Some kids are just more shy, but part of Chance's reluctance to talk around new people, I believe, has been his lack of confidence that they will understand him. His confidence seems to be growing now. This is a good thing for a mom to witness.
Chance knows where he wants to go and is very perceptive. He has announced to us his parents that he is going to play the guitar some day and that he will play for us and "all the people". Should we start planning for a garage band in our future?

Chance continues to progress really well with his implant. It is early in the process, but all indications are the implant was the right choice for Chance. He is thriving. He is hearing things that he just could not hear with hearing aids, and he is picking up things every day. He has a lot of questions, and is constantly asking about his environement. It is easier to explain things to Chance simply because he seems to understand more.
Our focus now is on pronunciation. Chance is acquiring vocabulary and his sentences are longer with more words. Now, we just need to help Chance know the correct way to say words that he has not been hearing quite right for a while. When Chance says something that is not quite right, we will say the words back to Chance with the correct pronunciation. Chance is quite good at saying the words back to us, and he really tries to say it right. Chance has a great desire to learn and communicate with words. Chance is also quite patient with us quiding him in his pronunciation. There is a delicate balance. We don't want to frustrate him or drive him crazy with constant nagging. You already feel as a kid sometimes that your parents are nagging with telling you to clean your room, wash your hands, and don't investigate too far into the bathroom electrical outlet. (Parents are just kill joys sometimes aren't they?) We don't correct him every time he is off on a word, but we try to make him aware of the way common things are really said. Some sounds are still hard for Chance to pronounce of course. Some sounds Chance says back to us, come out the same, even after 3 or 4 attempts by us to show Chance the correct way to say them. This indicates that to Chance, he is saying the words the way we are saying them. Sometimes he will even tell us "I know!" or he'll say the word slower or with more emphasis to let us know that he is saying it.
We are impressed with our little boys dedication to hear and his cheerful disposition as he continues his journey.