Monday, March 31, 2014

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.

Tuesday, March 25, 2014

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.

Sunday, March 16, 2014

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.

Sunday, March 09, 2014

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:)

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:)