Let the questions begin!

I found myself in the lunchroom at Chance's school sitting in the middle of a table with several kids who had questions about Chance's deafness.
I had gone up to the school to help out in the writing class like I do each week, and Chance and I had eaten lunch together. I had to go to the office to take care of some things, so I sent Chance out to enjoy recess with his friends while I finished eating.
I noticed little kids around me looking at me so I said hello and asked them how they were doing. Then the questions started.
"You're Chance's mom huh?"
"Is Chance deaf or is he hard of hearing?"
"Was Chance born deaf?"

I explained that Chance was deaf and that they think his deafness was caused by a virus he caught when he was about 13 months old.

"What is a virus?" One of the boys wanted to know.

I explained the best I could what a virus was and how sometimes if a virus gets into our bodies it can make us sick.

"That DOES happen." One little boy turned and said to the others while nodding his head and looking very serious.

I have found that kids are very accepting of Chance's deafness, they are just curious about it which I think is great. I don't mind questions or conversations about Chance and his deafness. I am curious about things I see around me that I don't know much about too.

"I'm here every week so if you have any more questions let me know." I said.

"You're here on Wednesdays?" One boy asked.

When I replied in the affirmative, he nodded and got up to take his tray to the lunchroom.

So I wonder what we'll all talk about next week?

I'm dreaming of good vibrations...

It was a dark and coldish night. Two people lay on the living room floor where they have dozed off. Suddenly, an unfamiliar noise rips through the house originating in the hall threatening to wake up all of the sleeping children in the bedrooms.
It is a rattling, no wait, banging, no wait, metallic kind of noise. Is it a machine gun? Is is a window being pelted by BB'S or rocks? Furthermore, where in the world is the noise coming from? Is someone with intent to do harm outside trying to flush us out or are they just going to storm the house?
After some searching, we realized the noise was coming from a metallic case in the hall. One of those money cash boxes with a handle. Do we want to open it to see what is inside? It could be dangerous. However, when faced with being maimed by an unknown force or having all 5 children awake in the wee hours of the night, it was an easy call to make. Open the case.
After bringing the case out into the living room and being now fully awake, the case was opened.
Uncertainty is now replaced by laughter.
Chance's vibrating alarm clock had been put into our metal cash box that the kids use when they are playing.
I do not recommend putting your vibrating alarm clock inside a metal box. Although it will wake up those who can hear it, it may also cause a heart attack if exposure is prolonged while coming out of a deep sleep. It may also possibly work to wake the dead.  (However, it would still prove useless to those for whom it was bought - Chance would still sleep right through it)

The vibrating alarm clock may have been bought with Chance specifically in mind but it's vibrations did a great job of waking up his parents. Job well done.

The hat

Chance got a new hat and he really really likes it. It is colorful and has flaps that hang down past his ears. Covering them.
Chance sometimes forgets that he is deaf and that wearing hats with flaps that cover his ears can impede hearing.
He looks really cute in the hat and I can understand why he would want to keep his head toasty here in the wintry wonderland that is our landscape some days.
He thinks he is hearing everything as usual. The irony of being deaf is, you don't know when you are missing out on things sometimes BECAUSE you can't hear what you are missing:)
So while Chance walks around looking all cute in his hat, he is not hearing as well as he does with out the hat.
If you ask him though, he will insist that he is hearing just fine.
This has been a theme for Chance this winter. He keeps his coat on and his hat over his ears when he enters school.
He wears a hoodie with the hat up to cub scouts.
At home, he likes to wear his hat with the flaps.
Hats are where it is at for Chance.
He just needs to realize that all of these hats impede his hearing when he keeps them on during school and scouts etc.:)
With spring on the way, maybe we can help Chance fall in love with a baseball cap type hat. Those leave the ears out and uncovered so the implant microphone is able to do its thing(namely catching sound) the best it can.

Sharing a splitter

We just got back from a great family vacation to Southern California where we took in Disneyland, Sea World and went whale watching. Unfortunately, the whales were not aware that they were supposed to make an appearance but we got to see dolphins and sea lions swimming alongside our boat instead. We did get free tickets to go back and watch the whales so we'll just have to plan another vacation to watch the whales :)

During our 12 hour drive we set up a movie screen for the kids to watch while we traversed across the desert. We don't have one of those fancy screens that just gently descends out of the ceiling of the van, we instead have a DVD unit with two screens and we strap them to the back of the seats so each row can see the movie. In the past, we've had some problems with all of the kids hearing the sound, so we bought some splitters that allowed two kids to plug into each unit using headphones. Chance shared a cord with his older brother.

As we were crossing the desert and coming into the city of Las Vegas, Nevada, we were explaining some of the sights. We explained how the Eiffel Tower was a replica of the one in France. We pointed out the Pyramid, and Treasure Island that had a boat that reenacted a battle. We had been giving commentary for a good 10 minutes, when Chance's brother in the back seat yells up to us something like,"Hey! Look at that cool hotel that looks like the Eiffel Tower! And what is that castle right there?"

I turned around in my seat and said,"That's what we've been talking about for the past 10 minutes and then teasingly I asked,"Were you not listening to your parents?"

Chance's brother looked at me, then took his headphones off and said,"What?"

"We've been talking to you about these sights for the past while. " I said.

"SORRY!" He exhaled. "Chance has had the volume on so loud that I think I may be deaf now!"

Chance was blissfully unaware that things were apparently really really loud when you could hear.

"You have to tell him when that happens because he doesn't know. It is not loud for him." I explained.

After that, we didn't hear any more complaints about the volume. Chance just had no idea that it was that loud. That is what happens when you are deaf and listening to a movie through a NoizFree device (it's similar to earphones, but it sends a telecoil/radio signal to the implant as opposed to earphones that send the sound through the ear canal).

Apparently you have to tell Chance when the volume is too loud when you share a splitter with him:)

The Battle Still Continues

The state school board is no longer considering dissolving the School for the Deaf and the Blind during this legislative session and instead is going to open an investigation to look at the inner workings of USDB (Utah School for the Deaf and Blind).

This is good news for the immediate future of the school. Hopefully, upon investigation, the school board will realize that cutting the School for the Deaf and Blind will only add more monetary needs to the state budget if the services currently provided by the school are expected to be dispersed out to all of the different school districts throughout the state that have deaf children. Not to mention who will have oversight over the services the deaf kids would receive through the district. Not just the oversight of their education but the oversight of their specific needs as deaf children. Without someone who knows the needs and the process it takes to learn to hear with a hearing aid or implant, and can guide that process, the kids will still be short changed regardless of what the district offers through a piecemeal system of speech therapy etc.
So now is the time for parents of deaf children and deaf adults to let the school board know just what the services provided from the School for the Deaf and Blind have made possible for kids and adults alike.

Chance is mainstreamed and academically at the top of many of his classes due in part to the services he received through the School for the Deaf and Blind. Chance was able to get what he needed to become successful. I honesty can not imagine what it would be like now if Chance had not received what he needed early on in school in the way that he needed to receive it.

One element of this battle over the function of the School for the Deaf is the friction that is present due to the two different philosophies over how to educate deaf children. Unless you have knowledge of this battle or are "baptized by fire" into the battle by having a deaf child and searching out services that they need, it is hard to imagine.

The school board has heard complaints about the School for the Deaf and some of those complaints revolve around how one feels deaf children should be educated. The debate has been playing out in the opinion sections of our two main newspapers. Some opinions have been more fair and balanced than others.

I appreciate the fact that we as the parents of deaf kids may choose different methods to communicate and educate our children. That is a right that every parent should be afforded.

I do have a problem though when it implied or just out right stated that we parents who have chosen the oral/speech route for our children do it because it is easier for us and not best for our children.

An article in the Salt Lake Tribune titled,"Schools for the Deaf Grapple With Two Tracks," talks about the basically two tracks to teach deaf kids to communicate. A deaf adult who teaches deaf children at a mainly signing schools asks,"How do parents know which language the child needs?" The context of this question is based on the process that parents go through when their child is diagnosed. Changes have been made to ensure that when a child is diagnosed, the family receives a visit from both a deaf adult who signs and a deaf adult who listens and speaks. After some exposure to both routes by the visitors and other contact by professionals, a family is asked to choose which path they would like to follow. You aren't married to that choice. If you start on one path and realize that it is not working, you can switch over and follow another path. The point is to get language into these little kiddos pronto. No matter which way you choose, a language has to be learned. Sign language is not something you will just pick up if you are not surrounded by signing people in your family. And if a family chooses sign, the whole family needs to be involved in learning to sign.

If a child is learning to listen and speak, they will need help with that route as they are fitted with hearing aids or implanted with cochlear implants. And there is a language window when it is better for children to learn to speak. Hearing kids are learning to speak from the day they are born as they hear sounds and learn words. Kids who are implanted early, join their peers in mainstream classrooms earlier and generally speaking are extremely successful with an implant.

When Chance was diagnosed, we were exposed to a deaf adult who signs and that is all. We had to actively seek out the other option of speaking and listening. Frankly, our main concern was only for Chance. We even looked at enrolling at a neighboring university to major in sign language. We took sign classes...all of us. Speaking and listening was right for Chance and it was not decided on a whim. As far as the question of "How do parents know which language the child needs?" Could that not go both ways? And as parents we are precisely the ones who know what our children need. That is our job as parents to seek out what our children need and provide the best we can.

The argument was made by this same person in the article that she supported choice, but that it should be the child's choice and that parents often chose listening and speaking for their children because it is convenient for them.

Um, being brutally honest here, nothing about teaching a deaf child to communicate is convenient. Convenient is your hearing children who learn to speak just by living with you. You don't even have to give it a second thought, it just happens as you are going about your days. This argument does not seem to be brought up when it involves signing deaf parents who choose to teach their deaf child to sign. If parents who choose speech and listening are questioned with, "How do parents know which language the child needs," could not signing parents be asked the same thing? The problem is the second guessing of parents by others at all.

There is a lot of commitment involved regardless of which method you choose to teach your deaf child to communicate with. Convenience is not what motivates parents. Being a parent is rarely about what is convenient for the parent. Giving all within your power to give your child what they needs is usually what motivates parents. To imply that parents who choose to teach their child speaking and listening are somehow selfish, and would be willing to short change their child just for convenience, is not only grossly unfounded, but very mean spirited.

The School for the Deaf should be able to operate with the two methods to teach deaf children together. Parents who choose sign should be respected and supported in what they need just as parents who choose listening and speaking parents should be respected and supported. It does not have to be a war. There is no right or wrong here, there is only CHOICE. And parents are entitled to choose what is best for their child without judgement.

The battle continues...

I woke up Saturday morning to the news that in these lean times the state is considering getting rid of the Schools for the Deaf and the Blind to save money in the state budget.

My first reaction was,"WHAT?"

Who is kidding who, that is still my reaction.

I feel getting rid of the School for the Deaf and the Blind would be a travesty. There are many reasons I feel this way.

First of all, I understand that economically this is a hard time for many people and by extension the state. I understand that there are more programs and services than money. Heavens, we all deal with this all of the time in our families. You have to pick and choose what are the most important needs and go with those.

I truly feel that the Schools for the Deaf and the Blind is one of those important elements that the state should leave intact even in this difficult economy.

Not all government services give back to the community ten fold as the kids who get what they need from the Schools for the Deaf and the Blind do. If these kids like Chance get the services that they need while they are young, they can acquire language skills and integrate into their neighborhood schools where they learn along side their peers like any other child. Just those few years of intervention by specialists can literally work miracles in these kids lives. They flourish and grow and are able to reach their potential in a way that is remarkable. Shifting this task to the school districts would be a travesty. Each and every district could not provide the spealization that is required for these deaf children to aquire language. I truly feel that the services offered through school districts could be nothing but substandard. School districts have enough they have to do and adding kids requiring such specialized help in the beginning would not be possible.

The Schools for the Deaf and Blind have the professionals already in place along with years of experience. In order for each district to acquire the specialists to help these kids would be near impossible. Not to mention a huge increase in expense. Which is truly cheaper, having a consolidated school that specializes in helping deaf children get what they need and then moving them out to their regular schools, or expecting each school district to acquire and provide these services individually?

Deaf children need specialized schooling beginning at age 3 in preschool. I cannot fathom school districts being able to provide these services. I believe we would see a huge drop in the quality and progress of deaf children. Years of experience and methods that work would be thwarted.

Not to mention the dedication of these professionals. I truly felt that my son was loved by many of the people that provided services. They were devoted.

The money put into these deaf kids now, pays off 10 times what is put in within a few short years. Many times the children are able to perform at the same level as their peers and reach their potential which includes having the capabilities to eventually go out into the world and support themselves and their families.

We have written our representatives and parents of deaf children are going to gather at the state capital this week to make our presence known. Our representatives need to see what these deaf kids are capable of and what a specialized focus on language and hearing can do for years and years to come.

No money will be saved by cutting the Schools for the Deaf and the Blind. In the long run money and services will be lost.

I can only imagine what parents of blind children are going through at this suggestion.

We need to put faces to the numbers for the legislators so they can see who this will directly affect, which would of course be the deaf and blind children of Utah.

There is hope. Our representative lives next door to a deaf child who went to school with Chance for many years. She has seen the impact the early intervention has had and she has many disabled children herself as she and her husband adopt children who have special needs.

I believe we have many allies on capital hill. We'll just pray for the number of our allies to outnumber the naysayers.

That explains a lot.....

It is the end of term at school and all of the assignments are due. The writing teacher let the kids look at their progress report in the middle of the week so they could make up any assignments that may be missing.

Chance was missing 3 sets of journal entries which totals 15 pages total. And he got zeros on every spelling test.

Huh?

So Chance spent a pleasant if not slightly annoying night at the kitchen table writing. And writing. And writing.

Chance was adamant that he had done the work and I felt for him, but as I told him,"If the teacher has no record of it, you have to do it again."

And after all of that work, Chance came home on Friday with all of the pages still in his binder because he forgot to turn them in.

Naturally, I was annoyed that all of that work might go for naught, so I drove him back up to the school to turn the papers in so he could get credit for his work. Chance explained to me that he had therapy every Friday during writing and that is why he forgot to turn his work in. That made sense. If he he didn't attend class, it would be easy to forget to turn in the work.

We met his teacher in the hall as she was coming out of faculty meeting.

As we were talking, the teacher mentioned that Chance was marked absent in writing that day. I told her that he was in therapy and that is why he forgot to turn in his work.

His teacher paused and then asked,"Does Chance have therapy every Friday?"

When I explained that he did his teacher responded,"Friday is when we call for the journal entries and take the spelling tests. Chance probably didn't have any idea that we were calling for journal entries."
It was a moment when a light bulb went on for both of us. Chance's missing assignments were due to the fact that Chance was never in class when they were called for. We were scratching our heads at home trying to figure out why our very conscientious and driven Chance would be missing so many assignments. It would also explain why we could find several journal entries in Chance's various notebooks yet they had not been turned in.

The writing teacher explained that each Friday, the writing teachers took turns teaching the lessons so each teacher only taught every 3rd Friday so no one had realized that Chance was gone each Friday.
WHEW! This explained a lot.

Chance was adamant that he had been doing the assignments and seemed genuinely confused as to why he had so many zeros on his progress report.

So, now we can work on the logistics of letting Chance turn in his assignments on Mondays (after having time to make up Friday's journal), so he is getting credit. Also, we can arrange for Chance to take the spelling tests on another day.

Spelling is one of Chance's strongest points which has always amazed me since he spent several years not hearing the words he spells. He can spell words he doesn't even know the meaning of. Due to this fact, I told the teacher that Chance could probably take the missing spelling tests right then which he did. 100 percent as I expected.

So, the moral of this story is, we need to communicate with the proper teachers and therapist so that everyone knows what the schedule is and so Chance does not go crazy wondering what in the world the expectations are :)

The gift of spelling

Chance has a gift. He can spell. I mean really really spell. Some people are just good at spelling and Chance is one of them. I remember reading once that good spellers are ALWAYS good readers - the two go hand in hand. Chance does love to read. Sometimes way later than he should, in fact. He'll get engrossed in a book and read in bed long after he should be sleeping.

What amazes me about Chance's spelling though, is that Chance has not heard the words all of his life like I have. He could not sound them out in kindergarten the way that I did because Chance wasn't hearing the subtle sounds in all of the words. For many years Chance wasn't hearing all of the subtle syllables of many words. Yet, here he is an incredible speller. He can spell words he doesn't know the meaning of. He'll spell the word perfectly than turn to me and ask,"What does that word mean?"

Since Chance has therapy every Friday and thus misses the spelling tests, the teacher and I were discussing what we could do to help Chance earn points for the tests he misses. She wondered if she should just exempt Chance from the last two spelling tests since he was in speech therapy and the term was now over. I told her that one day when she was sick and there was a substitute, the teacher had passed out a list of several hard words for the kids and had them test each other and then write down the words they missed to practice. Chance missed two words out of at least 50 words. Some of the words he spelled correctly and then turned to me and asked,"What does that word mean?"

In a bold display of confidence in my boy, I told the teacher that she could probably give Chance the spelling test right then and he would do O.K. So, that is what she had me do. While she was in the corner of the room gathering papers, I administered a spelling test to Chance. He aced it with 100 percent.

Good heavens. How do you become an expert speller when you are deaf? I heard words just fine in school, yet I didn't always get them right. Even when I slowly repeated the words in my head or whispered them to myself as I sounded them out, "annoying" or whatever the word may have been.

Yet Chance who doesn't have the experience with hearing words that I do, can spell like a pro. It is an amazing phenomenon.

The love of a brother

Chance has had a steady and passionately devoted right hand man as he has traveled this path of deafness.

When Chance was first diagnosed, there were some friends of his brothers in the neighborhood who would complain and run away when Chance would come to join them in play. Chance's brother told them that if Chance didn't play, then he didn't either.

This past year at school, some girls were constantly hitting and poking Chance's brother. It was all supposed to be fun and games but Chance's brother did not really like it. He endured it. One day these girls decided to start doing the same thing to Chance. His brother stood up and said,"Nobody hits my brother!"

When Chance was first diagnosed and entered preschool through the "School for the Deaf," Chance was traumatized and cried and cried when I dropped him off each day. I would watch through the two way mirror heartbroken as my baby struggled. The school asked me if Chance had ever been away from home for a night. I told him he had not. "No weekends away with grandma or grandpa?" they asked. I replied that he had had no such weekend. I had a new baby that prohibited me from staying at the school for long and it was devastating to see how Chance struggled. His world had been turned upside down seemingly overnight. Chance was having multiple tests done to check his hearing, he had just received hearing aids and now he was thrown into a world with lots of people that he had never seen before. Plus he was going through the summer when other kids his age were at home playing.

Chance and his brother dressed up for Halloween

Enter Chance's brother who volunteered to attend the older class in the same building as a model for language (kids who hear normally and can model language for the little deaf children). Chance and his brother did not attend the same classes, but they saw each other at recess and during lunch. The teachers told me Chance would run to his brother when it was lunch time and his brother would take him under his wing and help him feel secure.

This meant that Chance's brother was also missing out on summer playing but he never complained once.

When Chance signed up to sing in the Alexander Graham Bell Association's Speech Fair last year, it became apparent that though Chance knew the song quite well, it was a difficult song with many shifts and he had a hard time staying on tune during some parts. Chance's brother who was in chorus with Chance volunteered to go up on stage and sing with Chance. He sang real soft, just enough so that Chance could stay on tune. Chance's brother knew it was Chance's moment to shine and simply stood back and smiled as the applause came in after the performance.

Chance's brother has always made sure that in settings with large groups etc. that Chance was part of things and knew what was going on. A neighbor who used to watch the kids while I had appointments etc. said that she was so impressed with how Chance's brother and sister looked out for Chance to make sure that he knew when they were being offered snacks or knew what was going on in the game etc. She said that you could see the love between them.

This past year Chance has been in a school that is a little different than most schools for kids Chance's age. Instead of being in one class all day, Chance rotates through several different classes with different teachers in each class. It is the first year this school has been open and there have been lots of changes and adjustments to be made during the first several months as things get going.

Chance has struggled some with all of the changes. Enter his brother once again. Staff at the school worked out a deal with Chance that if he attended each class he earned points that he could redeem for a little time during the afternoon with.....his brother.

Chance has been a little trooper and forged ahead in an astounding way through his deafness. He has had a most devoted ally during the process in his brother and it has been a great blessing to both of them and a wondrous thing to watch as a parent.

Chance learning the guitar

Chance's guitar lessons are coming along quite well. As an added bonus, he is learning the words and tunes to many new songs and learning to keep time as he plays.