Chance, are you deaf?

This past week at soccer practice, the team was told to move down field during practice.

Chance didn't hear this little tidbit of information and continued to dribble the soccer ball up on the hill.  So, and I am not making this next part up,  one of Chance's coaches calls out and said, "CHANCE, WHAT ARE YOU DEAF? GET OVER HERE!!!"

At this point things could have gotten really awkward. This phrase is usually just used as a figure of speech.

Chance ran over to where he was supposed to be and he and his friends on the team started laughing.

Chance's coach felt really really bad.

 She said, Oh, my gosh!  I didn't really mean that!  I feel bad!"

Chance had not taken offense.  He thought it was funny.

Chance had a good excuse for not hearing because, hey, he really is deaf.

Now it has apparently become a big joke at soccer practice.  The same situation happened again, where Chance did not hear that the team was supposed to move down field but he saw the team moving down field and ran to catch up.

Chance purposely ran in between his two coaches and said, "WATCH OUT! DEAF KID COMING THROUGH!"

It should be noted that the field where soccer practice is, has a hill leading down to the track and beyond that is the soccer field.  At the top of the hill is a parking lot where the kids are picked up for carpool, so if Chance was on the hill dribbling the ball, with the sound of cars off to the side and the wind was blowing and his coach was on the field down the hill and past the track, it could have been hard for Chance to hear her.

Yes, Chance is deaf and apparently it has made for some humorous soccer practice moments this week.

Chance has a reunion

The first several years of Chance's school years were spent at The School for the Deaf in a trailer classroom at a school two cities away.  Chance had a little posse of friends that attended with him and they all rode the bus to and from school together, shared the same teachers, had recess together, had speech therapy from the same teachers, began to integrate into the school classroom together and basically were attached at the hip for several years. These cute kids all moved from two years of preschool, to kindergarten, to first grade and into second grade together.  At that point, it was time for Chance to go out into the wide wide world and attend his local neighborhood school.  He was ready.  He actually ended up being home-schooled for a year and then going into a neighborhood charter school after we caught him up to his peers a bit more.

Chance no longer saw his fellow deaf bosom buddies on a regular basis as all the kids are scattered across the county.   Each of Chance's friend's left the School for the Deaf in their own time when they were ready.

I can still remember the little pack of deaf kids that were so cute and so little!  They seemed to have an understanding of each other even though they didn't always know what was being said.  They had lunch together every day and did the same projects.  They invited each other to their birthday parties and we parents drove kids across the valley to so that they could share in the birthday celebrations.  They were each other's best friends.

Recently, one of the mothers of these kids contacted me through Facebook and Chance was so excited to have a connection with his dear friend again. They immediately planned a get together with another of Chance's deaf friends that lives by us and was part of the original posse.

Chance said that a good time was had by all.  It was just the same as it had been before, they all just clicked and enjoyed being together even though it has been several years since they have seen each other. Chance says that his friend looks just the same - just much taller.

They all like sports and ended up playing lacrosse with neighborhood kids.  Isn't it great that these little deaf kids who could barely get their words understood back in preschool can now just join a pick up game of lacrosse with neighborhood kids who have always been able to hear and no one has a second thought??  It is not an "us" and "them that are different", it is just teenage boys enjoying sports together.  I love that!

I am so happy for Chance that he was able to reconnect with his friend.  I think they are going to make sure that they don't lose touch again and will just pick up where they left off.  They may go to different schools now and live in different cities, but they have a connection forever.  When you grow up learning to hear together in a world where you are the minority,  you make strong connections to those who go through the process with you.

I love these pictures of Chance and all of his friends from the School for the Deaf.  When Chance returned to school after his second implant surgery,  they all gathered around to have a look at his scar.  They were all so fascinated by Chance and this new development in his life.  It was so funny too because these kids had all been through this very same process!  Chance was actually the last one to get an implant in this group so they all actually had more experience than Chance did.  Many of them were much younger than 6 which is when Chance got his.  I remember wondering if they just didn't remember their own surgeries and scars that well because they had been so young when they were implanted.

Yes, it was a fascinating day at school when Chance walked in with a scar on his head, and it made for some very memorable pictures as the kids check out Chance's implant like it is a brand new thing even though they all already have one of their own.

Chance, this is your life

There used to be a show called, "This is Your Life" where people would basically have a review of their life by being reunited with various people from their past.

From what I remember, a person would sit in a chair on a stage while people from their life would make surprise visits.  They might be visited by their favorite school teacher that had a big impact on their life.  A favorite cousin that lives across the world may come onstage for a joyous reunion.  Perhaps a best friend from high school whose whereabouts for years was unknown would call out from back stage to see if their voice could be recognized before they come out for a hug combined with tears of joy.

Chance had such a moment at the speech fair.   Teachers, aids, therapists, coordinators, and other people who had worked with or known Chance through the years,  approached Chance in awe as they realized that the tall, fit, boy with a big smile on his face was the little boy they had worked with years ago.

Chance smiled for pictures, gave hugs and caught people up a bit on what he has been up to.  These people who have known Chance since he was 3 years old, are not just regular people.  They are extraordinary individuals that were there for Chance and helped guide him on his journey to hear.  They will always have a special place in my heart as they were a part of our team to help Chance and they were so dedicated, helpful and devoted.

Chance and his deaf buddy who did the skits with Chance asked us if they could take a lap around the school "just like old times," before we left.  We said they could and then waited in the van as they set off and jogged around the corner of the school.  It was dark outside and the boys were gone for quite a while.  When they got back to the car, Chance said that they had been gone a while because they had stopped to visit their favorite spots along the way.  They had stopped at their favorite spot on the playground, over by the lunchroom, and by one of the trees etc.  This school had been their home, and these kids made life long friendships with other deaf kids who were on the journey to hear with them.  They have an understanding of each other and what it has been like during the whole journey of learning to talk and hear from the very beginning when all of them were just learning to talk until now when they have all branched out into the world.

Chance's poem about what it is like being deaf

This weekend was the annual speech fair run by the Utah chapter of The Alexander Graham Bell Association.

Chance has been participating in these speech fairs for years.

The program always starts with the little kids, those in preschool.  They perform as a class and recite a poem they have learned, or sing a song together.  These are little deaf kids whose teachers have worked and worked with them on pronunciation and learning the words for their performance.   Some of them are pretty scared up there in front of a room full of people.  Some are little hams that love to be able to show off and loudly do their part.

Before they start their performance, the teachers have the kids say their names.  Some are easier to understand than others, but the parents of older kids like us, all agreed that the kids this year were easier to understand than our kids had been when they were three.  Part of this is due to early intervention and the fact that babies are getting implants earlier than our kids did, so they are hearing even better at an earlier age.
It seems like just yesterday that we were sitting in the audience watching 3 year old Chance perform.  Some years he was more shy than other years.  Some years he was easier to understand than other years.

I remember one year when Chance had been attending the School for the Deaf for 3 or 4 years.  His class was doing a presentation about Abraham Lincoln.  Chance had a tall black hat on and we had been working on the "t" sound with his teacher.  That sound was one that Chance could not hear that well and he often left it out.  The issue was compounded by the fact that in our region, dropping the "t" sound or saying it really soft was becoming quite common.  When people said, "mountain" for instance, it sounded more like mou'ain with a very soft t sound.  We were trying to help Chance learn to identify and say a sound that society around him was dismissing.

I had tears in my eyes as I watched those little preschoolers perform.  Chance has come so far and has surpassed our expectations.

Chance's first goals when he started preschool  at the School for the Deaf was to turn and respond to his name.  His teacher was really working on that with him.  He then graduated to saying three word sentences. At three years old.  We have come a long way baby.  Due to this fact, I felt that before Chance read his poem and did his skits for the group, that I should give a very brief introduction about where Chance started out.  The parents of the little kids just starting out don't know Chance.  They have no idea of the transformation in his ability to hear and talk that has taken place.  I wanted them to know how far he had come because I wanted to give them hope for the future of their own little ones.  When Chance was little, I wanted to see older deaf kids.  I wanted to see how they were talking, if they were integrated with their peers, if teaching them to hear was working for them.

I gave only a brief introduction telling the parents that when Chance started this journey, one of the goals was to get him to recognize and respond to his own name etc.  Then I turned the time over to Chance and let him talk and show people how far he has come himself.

Chance got up and read his poem with good rhythm and flow.  He brought chuckles and knowing nods as he talked about what it is like being deaf.

After his poem, Chance and one of his deaf friends that has been one of his best friends since their preschool days did a few skits.  They. Were. Hysterical.

After all of the performances, there were cookies for dessert.  When Chance was getting his cookie, a woman came up to him and told him that he did a great job on his poem and that she couldn't even tell he was deaf.  She said he didn't have a deaf accent.  Then she said, "I hope my son does as well as you someday."

Chance said,"There is always hope."  Then he said she walked away and he thinks she was crying.

Oh dear mom of a little deaf one, there is indeed hope.  It is hard when they are so young to envision what their language will be like in the future.  You just love your little ones so much and you want to know that they are going to be alright and that they will be happy.

Yes, fellow mom, there is hope.  Lots and lots of hope. There will be lots and lots of work, but you will see some day in the future, how well your child is doing and know that there is hope and happiness and success and incredible milestones that are overcome.  Hang in there, you can do this.

Here is Chance's poem about being deaf:  (We'll upload the video this week)

What it is like to be Deaf

By Chance and Taunya Paxton

Some people seem to wonder what it’s like being deaf

So I would like to tell you all a little about myself.

In the morning when I wake up, I can’t hear a thing

But that never really stops me from starting in to sing!

My siblings don’t really like it in the morning when I can’t hear,

But I like to wake up a bit, and then put on my ears.

In the morning, my parents sometimes try to tell me to hurry,

But without implants I can’t hear them, so I don’t have to worry

At scout camp, I can go to sleep without a single care,

And I don’t have to worry if that noise outside’s a bear.

In the tent, I can sleep through ghost stories and more,

I do need help waking for up breakfast, that is what friends are for

I listen to music through headphones just like every other teens

My headphones just cost more, as I let the music stream

Should my older brother and I get into a little tiff,

I can just tune him out, with a simple little click

I can have silent time and just let my mind wander,

With my implants off, I can think and ponder.

I’m on the city swim team, and in water I take flight,

While the others hear a horn, I watch for a strobe light.

At school I tried out and made the soccer team,

I am a lean, mean, bilateral, implant wearing machine.

Occasionally an implant has fallen off out onto the grass,

But I pick it up real quick, and then just run extra fast.

I like school most of the time and I usually hear just fine,

But if I should miss something, cute girls can be so kind.

I really do like school and working for good grades,

Working hard and challenges have never made me afraid.

I may be deaf, but that will never ever stop me,

From being exactly who and what I want to be.

Some people wonder what it is like being deaf in both ears,

I am just like anyone else and do things like my peers

I just have a super power that others don’t possess,

I can choose to turn off my ears when I want a little rest.

How deaf kids listen to music

Teenagers like to listen to music and can regularly be seen with ear buds nestled into their ears as they go about the business of doing their household chores, exercising and traveling.

It is hard to get the attention of a teenager with those ear buds in.  Their hearing is severely impaired when they stick things in their ears that block off the pathways of sound.  If you are loud enough, or make the rule that one ear bud is in and one ear bud is out when you are involved in activities that require frequent communication, you can work around the ear buds.

DEAF TEENAGERS ON THE OTHER HAND HEAR NOTHING when they are listening to music on their personal iPods etc.  It isn't that the pathway to sound is blocked to their ears by headphones, that pathway has already been blocked by nature causing deafness.  But deaf teenagers can program their implants to focus in on the music, and thus any focus on any sound you make is nill, zilch and nadda.

Deaf teenagers also have fancy headphones....or at least head phones that are unlike the kind you just pick up at the store (and much more expensive, too!). In Chance's case, they look like this:


And here is the same cable, plugged into the implant processors:

Chance in the music zone, is like Chance without implants on.  We have told him that he has to tell us when he is listening to music just so that we don't go crazy thinking that we are telling him stuff and he can't hear a word we are saying.

Chance looks so innocent when he is walking around not being able to hear anything we say. Chance's older brother has a fondness for music, but he can at least hear an inkling of what we say when he has ear buds in if we talk loud enough:)  Chance is completely in "the zone" of no hearing.

We want Chance to be able to listen to music and bee bop around the house while he does his cleaning, we just have to know that unlike other teenagers with headphones in, Chance is completely incapable of hearing us.

It is just nice to know as a parent when your child is not going to respond to your requests:)

Addendum:
Now for the rest of the story - from Chance's Dad :  the technical discussion about cochlear implant music options:

1> Adapter cables, like the one above that Chance uses - these are specific to the manufacturer of the implant.  It has a normal jack to plug into the music source such as an ipod, then one - or two for bilateral use - adapter plugs that plug into a special port on the implant.  These are specialized proprietary cables, and as such are quite expensive, but they do plug directly into the implant so the sound quality is as good as you can get under the circumstances.

2> Telecoil devices, such as the NoizFree Earhooks:  This device utilizes a telecoil signal - a local magnetic signal - from the earhook to the hearing aid or cochlear implant.  The earhook receives the music signal like any normal earbud, but then instead of converting that signal to sound as a normal earbud would, it converts it to a telecoil signal, and transmits that signal through the earhook to the implant.  The implant has to configured to accept telecoil signals - though newer implants are moving towards an 'auto-telecoil' mode - and the earhook sits between the implant processor and the head.  While the signal is good, Chance says the direct cable above is better.

3> Loop:  This also converts the sound to a telecoil signal, but rather than earhooks, it is a cable loop worn around the neck that sends the signal to the implant.  Loop technology was - until recently - commonly used for FM systems.

4> Over-the-ear headphones - This is your normal everyday over-the-ear headphones, that happens to also cover the implant microphone.

Certainly, there are going to be other options, but these are your primary options - at least in our experience with Chance.

Being the awesome kid that he is,  Chance has started to tell us when he is going to listen to music.  He has also started just plugging in one implant, leaving one side dangling in order to keep contact with us in the outside world.

He also told me,"Mom, I have made it so that I can hear you better when I am listening to music."

That means that he has set his implant to a setting that lets some of the outside noises come through instead of just having them tune into the music.

We're working together to make this very normal teenage activity work out well for all of us:)

The sounds of the ocean...or a torrential rain that threatens us all

The sounds of the ocean  and streams gurgling can be soothing and relaxing.  Which is why I was listening to various options to see which calming music I wanted to download onto my tablet.

Suddenly, I became aware that Chance, who was in a chair in the living room was swiveling his head looking over in the direction of the window and keenly checking outside, and then looking in the direction of the kitchen.

He was obviously looking around to find something, and soon he got up out of the chair with a look of urgency on his face.

"'WHERE IS THE WATER COMING FROM?"  Chance was a bit panicked now and was gearing up to help bail out the torrents of water that he was certain were going to flood our home.

I listened too, wondering if I should be concerned about a faucet that was left running or something.

Then I realized that the relaxing sound of rain coming out of the computer speaker and relaxing me, was working Chance into a panic, as he couldn't tell where the sound of running water was coming from.

When I told Chance that I had turned the sound of rain onto the computer, he came closer, listened for a minute, and then looked at me like I was crazy for putting on the sound of running water.

It was relaxing running water, rain falling, ocean waves and such.  Apparently, Chance and I have different ideas of what sounds are relaxing:)

Sing No More

Chance and I were in the car after I picked him up from school, when something he said reminded me of the movie, "Chitty, Chitty Bang Bang."  This movie was known as "Putta, Putta" in our family for a long time because that is what Chance called it when he was little.  He started asking me to watch, "Putta, Putta" one day and I had absolutely no idea what he was talking about.  I remember standing in the family room completely confused as Chance repeated over and over again, Putta! Putta!  Obviously Chitty Chitty Bang Bang and Putta Putta sound almost exactly alike so I don't know why it took me so long to catch on to what he was saying:)

That movie was one of Chance's favorites when he was little, so I started to sing one of the songs from that show with the lyrics, "Truly Scrumptious, you're truly truly scrumptious...."  Kind of catchy isn't it?

There in the car, Chance looked at me with a weird expression as I serenaded him with a song from his favorite childhood show.

"Remember this song?"  I asked in between stanzas.

Then Chance smiled a crooked little smile and said, "Are you sure you are singing that song right?"

"Putta, Putta!"  I said giving him a hint.

Chance told me that he remembered the song(we had just watched the movie again, I am sure that helped).

"Are you sure you are singing that song right?"  Chance asked again.

I emphasized the words for Chance to make sure he heard the lyrics.

"No, I mean is your voice supposed to sound like that when you sing, all high and squeaky like that?"

I looked at Chance for a second and then reminded him that HE was the one that was hard of hearing and couldn't hear things quite right and if there was a problem with my singing it must be his issue not mine.

He laughed.  And I quit singing.

Chance hears only what he wants to hear

Yesterday we went to Chance's brothers regional swim meet.  For those of you who have not experienced these events, they are LOUD.  You have hoards of teenagers from several different  high schools milling around a pool waiting their turn to compete.  There are many different events, the back stroke, the breast stroke,  the 50 yard freestyle, the 100 yard freestyle etc. etc.   There are several heats of each stroke and then there are girls races and boys races.

Big cavernous rooms with swimming pools have interesting sound dynamics.  Everything is echoey and the sound carries.  All this sound was not a problem for Chance.  It was a problem for his little brother though. When we left the swim meet, his brother started to hold his head and cry.  A lot.  We could do nothing to comfort him in the car so we just tried to be quiet as each noise brought fresh tears of pain since his head hurt so bad.  He seemed to have a massive headache.

While the rest of us sat without music and without talking that much, listening to the crying, Chance tapped me on the shoulder.  He was smiling and holding his implants in his hands.

"Oh, this is so peaceful and quiet!"

Indeed, it would be nice to be able to take one's ears off at times.

As a mom, I need to hear the crying to make sure that everyone is alright and Chance's poor brother was alright once we got him home, snuggled him, and gave him a bit of medication.

But at times, it would be nice to have the option of taking my ears off like Chance.

Chance's classmates ask all sorts for questions

Talking to the kids at Chance's school went really well.  The kids had already learned a bit about the Deaf Community and sign language.  It was a good experience for all of us I think. We explained why we decided to get implants for Chance and our experience.  We also talked touched on philosophical differences between the Deaf Community and those who want deaf children to learn to hear and talk.  It was an interesting discussion.  I believe everyone should do what they feel is best for their family and no one should feel that attacked for their decision.

The kids asked some really good questions about how the implants worked, and if Chance heard things in monotone through the implant.

Chance's dad and I talked to the class for about an hour and 20 minutes and then we had Chance come in to answer questions.  Chance is good to do this kind of stuff.  It does not phase him and he is always so generous to answer questions about his implants and what it is like to wear them.

One of the boys said that he wondered what it was that Chance had on his head, but didn't know if it was appropriate to ask.  Then one day Chance said hi to him in the hall and introduced himself and after that, he didn't even notice the implants.  Chance was just Chance a kid he said hi to in the hall.

The teacher had the same concern about whether it was considered appropriate to ask questions when you see someone with something like implants on.  I can't speak for other people, but I told them that I always welcomed questions as Chance was growing up.  I figured that I would be curious if I didn't know what implants were and I saw someone wearing them.  I could see myself trying to figure out if they were special hearing aids or something.  It is natural to be curious.  I knew some other moms of deaf kids that got really bothered if people stared at their kids implants.  I usually smiled at people if I saw them staring and several times people would approach me and ask what they were.  Once I told them they were like,'Oh, OK".  Most of them thought implants were pretty cool once I explained what they did and how they helped Chance to hear.

I found kids to be wonderful most of the time too.  Many times kids are more open in their questions as they don;t have that sense of worrying about if it is appropriate to ask about them.  They are just curious.  I will always remember a group of kids in Arizona while we were on vacation.  We went to pick up my niece from school and the kids at lunch gathered around us as we sat down and started asking questions about the implants.  Once we explained that just like some of them used glasses to see, Chance used implants to hear, they were satisfied.  They asked a few more questions like how they stayed on his head etc. but there was no malice in them.  They just wanted to know.

Chance told his classmates what it was like to wear implants and one of the things he brought up was how nice it was to be able to tune the world out at night.  Everyone envied Chance his ability to do that.  He made his classmates laugh by telling them about how he took his implants off once in an argument with his brother about an airsoft gun.  Many of the kids expressed how awesome it would be to be able to tune out siblings during disagreements etc.  We actually don't encourage this method of coping as a family for obvious reasons.  Chance can not just tune out when he doesn't like what is going on. He hasn't actually done that for a while now.

Chance answered questions and let the kids see where the magnets attached the implant to his head.  He also showed them how is implant would attach to the door frame as well.  They all loved that.

We got many thank yous after the presentation.  I think we all benefited from learning about Chance and hearing loss in general.  We showed the kids a video of the Flintstones where you can experience a little bit what it is like to have mild hearing loss, moderate hearing loss, severe hearing loss and a profound loss.  That clip really helped the kids to see that having hearing loss is not just about making sounds louder.  The more severer your loss is, the more muffled the sounds become as well as getting quieter.

It was a fun experience and the kids were very respectful and thoughtful in their questions. Oh and now the kids all know that Chance can read lips really really well.  One of the girls asked Chance if he could read lips across the room.  Chance answered that he could sometimes.  The girls giggled.  I think I helped to give away Chance's superpower of reading the lips of girls to see what they are talking about.  All of the girls were older and in high school so maybe they won't pass that information down to the girls that are Chance's age:)

One of the girls challenged Chance to test his skills with fingerspelling on a website that signs really really fast.  She put it on the highest setting to see if Chance was up to the challenge.  He figured it out on the third try as the girl was using her hands to finger spell at lightening speed.

Chance is really good at lip reading AND fingerspelling.  The class was impressed.

Chance's class gets to know Chance up close and personal

Tomorrow is the big day.  Chance's dad and I will be going to the school to give a presentation about Chance and how we chose to have him learn to speak when he was diagnosed as being deaf.

Chance's school is having a three week period called Winterim where the kids do in depth study of topics not usually covered in school.  It is a three week term of learning that the kids look forward to after the Christmas break.  One of the classes this year is an introduction to ASL.  Since Chance attends the school as a deaf boy who hears, the teacher asked us if we would come and do a 90 minute presentation about how we chose to get implants for Chance and our journey.  These kids will have also been exposed to the Deaf culture and their desire for deaf children to learn to sign.

Although there can be very passionate feelings on both sides of the choice to teach a deaf child to hear or to teach them ASL to communicate, we hold no ill will towards any families and their decision.  To be honest, we have felt judged during our process to help Chance hear by those who thought deaf children should mainly sign.  That path would have not  have been right for Chance.  Chance hears and he loves to hear.  He will use sign language when a situation calls for quiet such as church or when he doesn't want his siblings to know what he is telling us.  But on the whole, Chance considers himself a speaker and he is very good at it.

Chance knows about this presentation and I asked him if he was OK with us sharing his story, along with pictures and video of him growing up.  He had no problem what so ever.  His fellow classmates are about to hear the nitty gritty story of Chance's deafness and his journey to hear.

We have some great video of Chance when he was little and learning to speak and read.  My favorite is the prayer video, because it captures a period of our lives perfectly.  At the time of the video, we didn't know that Chance was deaf, we just knew that his prayers at night and over food were long and full of words the rest of us didn't know.  Some of Chance's prayers would go on for some time and his brother who was 4(Chance was 2) would start signaling to Chance that he should start to wrap it up.  We don;t usually record prayers, but Chance's prayer ritual was getting so amusing that we felt we should record it for posterity.  And we are glad that we did.  It shows quite well what Chance's attitude was.  He was perfectly fine and knew what he was saying...... it was the rest of the family who had issues if we couldn't understand him.

I just love this kid.



















Chance getting ready for his first implant surgery.


          













We will work on uploading the video to the blog tomorrow.  We may be a bit biased, but we think Chance is adorable in the video.