Tuesday, October 28, 2008

He came bearing gifts...

Our Japanese student left us with many gifts so we have a bit of Japan in our home now. The kids have been working on their newly acquired origami skills. One of the gifts was several pieces of origami paper and a booklet on how to make things. Our student made several things for the kids and had taught them now to make some basic things and now they are just running with it. Their dad has taken an interest too and is now folding his heart out with the rest of the crew.

Parting...such sweet sorrow

Our Japanese student left at 5:45 a.m. this morning. The kids made us promise that we would wake them up when he left so that they could say goodbye. They had all already cried and hugged him goodbye the night before, but one can not get enough suffering when saying goodbye to a new good friend.

Our student, who was rather shy and unsure in the beginning, had turned into a sort of big brother by the end of the week. He watched out for the younger kids when we went places and held their hands as we crossed streets etc. He sat on the floor and played boardgames with Chance and his brother.

Chance wanted to know why our student could not stay longer. And then he wanted to know if we could go visit him in his home in Japan.

Waking Chance when he is in a deep sleep is usually a little like waking the dead. He is a deep sleeper and he can't hear you talk to him, so usually we shake him gently, then shake him more intensely, and then roll him all the way over. Still he sleeps on sometimes.

This morning when I went to wake up Chance, I was expecting the same scenario. I was contemplating what Chance would say later in the morning when I explained that he would not wake up, when he miraculously awakened by just being shaken. He got up and seemed to know right away that he needed to head out to the kitchen and say goodbye.....again.

We had explained to our Japanese student that Chance was deaf and how the implants worked, but we were not sure how much he understood. When Chance came out this morning, with no implants on, our student mouthed the words goodbye to Chance but did not verbally say them out loud. He seemed to know that Chance could read his lips and sound would not be necessary.

So the kids stood in the dark on the porch and our student turned back to wave several times as he made his way across the grass to the car waiting to take him to the chartered buses that would take the students on in their journey.

Chance and his siblings did eventually go back to sleep after we set pillows on the living room floor and layed with them as they whimpered for a while. Chance wanted to know when Hironao's birthday was and then he wanted to know if we had his phone number and if we could visit Japan. All of these questions while we lay in the dark and Chance had no implants on. I convinced him that talking about these things would be more effective later.

When Chance's dad woke him up to shower for school, we all heard him and knew that he was awake. He was wailing his little heart out in the shower. Chance was letting out his grief during his quiet preimplant world this morning. The rest of us hear right when we wake up however, or are awoken by sounds we hear...like Chance this morning:) It is good to get such feelings out.

Chance really took to our student and when I brought him home from school today after helping at the Halloween party, he told me,"Nothing is fun without Hironao."

Chance had fun at the Halloween party, I had noticed that. But the thought of coming home knowing that our student would not be coming back, reminded Chance of his new friend.

Who would have guessed a few years ago that Chance would have gotten to know and love someone who only stayed at our house for a week? The implants make it so Chance can communicate and participate in all that happens in the house. I am so grateful for that. And it is fulfilling for Chance to be a part of everything.

Saying goodbye..such bitter sweet agony

We had a big dinner for the last night of our Japanese student's stay. All of the host families were invited to a dinner and a program. We got there early and made sure that we got a table that was close to the stage and the screen where pictures of the week would be displayed. We figured Chance would appreciate that.
The room was full of families. They were expecting about 1600 people so we were in a ballroom. When we first got there, it was loud as is always the case when several hundred people are in a big room having various conversations. This did not bother Chance. However, when the program started and the hosts started talking into the microphone, Chance turned to us and said,"What are they doing?! It is too loud!" The speakers for the microphone was really loud and then the sound bouncing off the huge room and high ceilings amplified the already loud noise. We had Chance turn his implant to another setting made for crowded environments and he seemed fine after that. He didn't complain about it being too loud through the rest of the program which included martial arts and dance routines. He loved watching and even got up and participated in a dance with our Japanese student when the audience was invited to participate.
Chance even heard us quite well while we ate and watched the program.

Wednesday, October 22, 2008

Who needs language anyway

Our kids have really taken a liking to our Japanese student and this includes Chance. Chance has all kinds of questions about Japan now. He had our student point our where Japan was on our globe and he wants to make sure that he gets to sit by him during our meals.

Our Japanese student struggles with the English language somewhat, but Chance is compensating for the lack of verbal communication.

Chance along with his siblings makes sure that our student understands what is going on. We took our student out to eat at a buffet style restaurant where you can go back as many times as you want. Our student indicated in his letter to us before he arrived that he wanted to try American foods. We have been cooking traditional standards at home and introducing him to things like pancakes and peanut butter. He did not care of the peanut butter.

At the restaurant our waitress was running around trying to keep up with all of her tables but the dishes ended up stacking up in the middle of the table anyway. Seven people can stack up a good amount of dishes when they are going to the salad bar, main dish section and dessert island. It was during such a stack up of dishes that our student decided to get a picture of all of us. That is great, I am a picture taker myself. What I found funny was that his picture is going to show dishes all over the table some stacked on top of each other as we all smile. I can see the scenario back home when our student shows his pictures of America to his family. They may gasp and say to themselves,"Wow, we heard that Americans like to eat but we really had no idea of the quantity!"

What has been the most tender about having this student stay with us, is Chance's caring for our student. Though their talking has been limited due to a language barrier, Chance has become attached to our student and he makes sure that our student feels loved. When we were walking into the restaurant, Chance threw his arm around him. Chance hugged him goodnight the second night he was here and smiles up at him as they walk side by side. It occurred to me that of all people, Chance would know what it is like to feel left out and not be able to understand what is going on around you. Sweet little Chance makes sure that our student does not feel alone though and generously displays his caring. I don't know how touchy-feeley most people are in Japan, but our student will go home knowing that he has a buddy in Chance.

What's in a missed word or two

We have an interesting phenomenon happening at our house. We have a Japanese student staying in our home for a week. It is a great program really. There is a junior high in Japan that sends its students to the United States for a week when they are in 9th grade. There are 235 Japanese students scattered across households in our valley. They are getting a taste of life in America by touring various sights, attending school for a day and spending time with an American family and seeing how they live.

Our kids are so excited to have our student here that when he heads out for tours, etc, during the day, the kids constantly want to know when he will be back.

The students have studied English and some know the language better than others. Our student struggles with the language a bit and we don't know Japanese so we are doing some improvising during our conversations. During our orientation before the students arrived, we were told that the students may nod while we talked to them even though they don't understand what we are saying. My husband and I chuckled at that and expressed how we had been through such a scenario before. Chance would nod at us sometimes even when he did not know what we were saying. We are onto that technique.

The students learn English, but putting a language into practice in an actual foreign country is a different matter entirely. My husband and I have both lived in foreign countries for an extended period of time...my husband in Spain and I in the Netherlands. I studied the language before I arrived in the Netherlands but once I was there and talking to native speakers, I thought,"What language was it that I learned? These people speak a different Dutch than I know!" The people talked so fast and they didn't use words in the same ways that I had read about in the book. They did use the same words, but they said them slightly different or didn't enunciate the words as perfectly as the way the book had laid them out. So we feel for this boy who is living with us for a time.

He has been sitting in the middle row of the van while we drive since it is easier for him to fit there instead of squeezing into the back with the kids. This has made some conversations very interesting. When I am asking the student for instance to choose between two activities, Chance is in the very back not hearing all of the conversation so he has lots of questions.

"We are going to carve pumpkins?" Chance calls from the back. I had asked our student which activity he wanted to do and he had answered yes to both of them, so I was trying to restate the question using different words so that he might understand what I was asking easier.

"We are going to carve pumpkins?" Chance asks from the back seat.

"No, Hironao might carve pumpkins."

"What?! Why can't we go?"

"Because it is for the big scouts and boys from his school not for us."

"Do we get to carve pumpkins?' Chance wants to know.

"Yes. Later."

Chance's older brother has found himself in the old role of explaining things to Chance as I drive when Chance does not understand all that I have said. Chance can hear a lot, but just missing one word or hearing one thing wrong can really throw off an interpretation of what has been said.

Thankfully, Chance misses less conversations than ever before now. His hearing is not perfect, but he is not missing out on all that he used to. Moments like this remind us of just how well he does on a day to day basis.

Monday, October 20, 2008

Don't go to the zoo!

There are stuffed animals laid out all over my family room floor. Two of Chance's friends are desperately trying to contain the situation and Chance is standing at the foot of the stairs giving a news report.

"Don't come to the zoo. The animals are going crazy and they will hurt you." Chance reports.

I am sitting at the computer and have been here long enough that the kids have forgotten I am here. Therefore they are not shy about playing and going on as normal even though there is a mom mere feet from their zoo.

I like being able to listen to them as they concoct stories of a zoo gone amuck. Considering that there is now a nuclear bomb about to detonate, one can not blame the animals for getting restless.

I love to hear that Chance is right in the mix, helping to set the scene and able to hear and understand when the kids tell him that he is the news reporter and needs to go on T.V. and warn people about the animals at the zoo. Chance is just one of the kids able to keep up and be a part of their creative play and can go right along with the constant developments such as the fact that one of his friends has now been pulled into one of the animal cages. Chance has already been wounded and his friends have set up an imaginary tent around him so that they can administer first aid.

Chance is warning the public on the news, securing a nuclear bomb,and trying to decide what to do about an erupting volcano. All while fighting some grave injury incurred while trying to save the animals at the zoo.

It's just all in a days work for Chance.

Wednesday, October 15, 2008

The IEP

Cue the scary music.........The IEP has been known to strike if not terror, at least unease and severe discomfort into the hearts of parents whose children require them. IEP stands for Individualized Education Plan. Various situations warrant a child having an IEP. Autistic kids, mentally challenged kids, and of course deaf kids have them which is why we know all about this process. I worked at one time at a residential treatment center for troubled teens and they all had IEPs.

The reason parents find IEPs so frightening varies. It usually boils down to this: if your child is on an IEP it is because they need special or extra help and as a parent, you want your child to have the services they need and want honest analysis from the school on what those services are. As a parent you study what it is your child needs and then you have to rely on the school district to administer many of those services. Sure your child is deaf and you know they need help hearing, but how much speech therapy is sufficient to get them where they need to be?

As a parent of a child on an IEP you also face the daunting task of facing a school district that does not always want to tell you what your child needs because of the fear they will be expected to provide it. What is provided by each district varies within states and there are huge differences between what each state offers. A deaf child in one state will get their $5,ooo.oo FM system paid for by the district. Other states will require a fight just to get the proper amplification into the classroom of a deaf child let as well paying for a device such as a FM system.

There are also no hard and fast rules to be found. How much speech therapy does a deaf child require for instance? I have talked to deaf adults who are out in the hearing world who talk about having constant speech therapy throughout their school years. They have gotten emotional as they talked about the role that their speech therapist played in helping them acquire the language they needed. Sometimes these same people absolutely hated speech therapy, but they admit that it got them to where they are today...being able to talk and communicate as well as they do. Advances in technology make it easier for deaf kids to hear in many instances than the hearing aids of 20 years ago. But the need for speech therapy in a deaf child's life remains vital.

Speech therapists in Utah are hard to come by in the schools and have huge caseloads. Chance was tested by a speech therapist in the school district before the IEP and she determined that Chance did not need speech therapy. This did not make us as parents happy at all. Chance is doing very well, but he has speech errors and we know that they need to be corrected. He has come a long way, but there are holes in his vocabulary and his speech needs fine tuning with a focus on articulation. We as parents have a responsibility of helping Chance at home and are willing to do our part, but Chance needs the extra help of a professional who is trained in aiding those with speech issues.

Since we were concerned about Chance's speech needs at this time and where we should go from here, we had Chance tested by a speech therapist before the speech test at school was administered. We did not realize it at the time, but the exact same test was administered by both speech therapists. The speech therapist not affiliated with the school determined that Chance did need speech therapy and diagnosed him as having a moderate articulation disorder and a mild expressive language disorder. As his parents, we knew that there were some things to work on with Chance and were looking for guidance as to which direction we should be headed.

Needless to say, the difference in the test results was troubling to us. Was the school telling us what they offered or what was needed? As a parent you ask yourself these kind of questions over and over to assess if you are giving your child what they need to succeed.

The fact of the matter is, as Chance's parents we know that he is capable of absolutely anything. We see no boundaries for Chance and what he decides to do. Our fears lay not with what Chance can't do, but if we as parents are doing what needs to be done so that Chance gets what he needs to excel. How can we make sure that he is provided with all he needs to be all that he is capable of?

We have a good IEP team that works with us to help Chance. With teachers that care about him and an administrator that has been with Chance from the beginning and is concerned that Chance succeeds. And he is succeeding. There is still some work to do.

So, in our IEP meeting, we requested that Chance get speech services from a speech-language pathologist. We brought up the testing we had done, and had a letter from our audiologist stating that he felt Chance needed speech therapy. Chance will be now be getting speech therapy once a week along with some other therapy services. We feel good about this and will be assessing if this seems to be getting Chance what he needs.

As parents, we are willing to do our part at home, it is a team effort. I have been jotting down words that Chance does not know when he reads books or when words are used in conversation. One of his teachers thought it would be a great idea if I sent in the lists of vocabulary words that I note Chance does not know and they work on them at school as well. This is a fabulous idea and will help Chance learn faster and more thoroughly I think. One of my concerns was that I would be loading Chance with vocabulary at home and they would be loading Chance with new vocabulary at school and his little brain would explode from overload. With all of us working together, we can help Chance fill in those holes he has.

We'll see how Chance does with speech therapy and if he is getting what he needs. And we'll continue to work at home with Chance and expose him to what we think will help him reach his potential.

This is a journey that never gets boring and continually highlights what an incredible little person Chance is.

Wednesday, October 08, 2008

The weather through music..

Chance and his class got to attend a concert by the Utah Symphony that was based on weather. Yes, that is right. Weather. Chance's class has been studying weather so hearing the symphony's interpretation of weather was a good match.

When Chance got home, I asked him, "So, did you hear thunder at the symphony?" Chance vigorously nodded his head yes and then he gave me sound effects to punctuate what he had heard.
"Babooooom!! That was thunder." Chance informed me.

Then I asked him if the symphony had done rain. Chance nodded yes and started sliding his hands on an imaginary instrument saying something like "dut, dut dut."

When Chance's dad got home, he asked Chance what a tornado sounded like. Chance started whirling his hands in the air while making a deep throated voice, "Ba-bing! Ba-bing!"

Chance then asked us if we knew that a man stood up at the front and waved his hands "like this"....then he mimicked a conductor leading music. We explained to Chance he that was called a conductor and he was leading the people playing the instruments.

Chance also informed me that he had seen the violins and had told his friends that he was going to come home and have me show him how to play it. Oh. I guess I should pull that violin out then and start playing again:) I would like to actually. Taking violin lessons was one of those things that went on the back burner when we found out Chance was deaf and started our journey to get him what he needed. Many things went on the back burner that we are gradually trying to add back into our lives. It was as it needed to be, but having a child with special needs definitely impacts your life, time and hobbies. A simple thing like Chance coming home and telling me he wants me to show him how to play the violin, reminds me how our lives have changed during the past few years. I did not play well enough to give lessons to someone else. But I do plan on playing again. Maybe Chance and I can do duets.

Sunday, October 05, 2008

Chance gets political

Gone are the days when our conversations around the house were lost on Chance. He picks up things just like any of our other kids do. He is also aware of some current events.......like say the election coming up. The months of campaigning have had an impact on our little deaf son. Isn't that wonderful!!! He has heard the ads on T.V., and heard some radio commentary while we are driving around town.

We have discussed the election some with the kids. Who is running for office, how the candidates are narrowed down to two, who we are voting for, and how important it is to vote. Chance has asked some questions along the way as he tries to figure the system out. Such as when the vice presidential debate was on television. Chance wanted to know who THOSE people were. They seemed new on the scene.
Chance has decided that he wants the same person to win the election as we do which is quite natural.

It was at a birthday party for another deaf child of all places where Chance had his political discussion. I am still trying to envision how this whole conversation went down between the two boys. There they were, two deaf kids with implants in a loud room full of the sound of numerous video games, clanging from various automatic cars that go when given a token, and many people engaged in several different conversations. Maybe they were standing over by the tables where pizza is served...it would be slightly more quiete over there.

However it happened, Chance and his friend came to realize that they wanted different presidential candidates to win the election. Chance came home and told us with a sense of awe that his friend wanted the other candidate to win. Chance also informed us that he had informed his friend about who he wanted to win.

It is good to know that Chance is up on current events and is able to hold his own when discussing
politics:) Who would have thought a few years back when Chance struggled to keep up on conversations going on about the house that in a few years, he would hear well enough to be out campaigning? Life is full of great surprises!