Sunday, January 31, 2010

Lessons on kids with disabilities

In church today, we had a guest speaker come speak to us about teaching kids with disabilities. He is a teacher of autistic kids but he gave a few insights for teachers about teaching kids with any disability. I may add here that I don't like the term disability too much. If something is disabled, it doesn't work. You disable a bomb or disable the wires to stop the flow of electricity before you work on the wires. Many people have challenges they work around, but they are not disabled and are actually quite capable.

I was very appreciative of the speaker's suggestions. I think it is so important that people realize that kids with any kind of disability are actually quite capable in many ways to do what the other kids can do. It just may need to be varied a little. When I taught music to the kids in our church for instance, I made sure that I had lots of visual clues and games to help the kids learn the songs. We had Chance, a boy with down syndrome and two kids with autism. I couldn't help but notice that too often, the kids with disabilities were not participating in what was going on. They didn't know the words to the songs yet, understand the story or got bored with all of the talking. Simple changes really made the situation more enjoyable for those kids.

The speaker suggested letting the kids be involved and thinking of them not as the "autistic child", or the" deaf child" first, but by their names. He said people didn't mean harm, but by referring to kids by their challenges as opposed to their names was putting the focus in the wrong place. And he talked about letting these kids do all that they were capable of doing even if they needed a little help. The point was letting the kids do what they could do and not limiting them.

At the end of his presentation, he opened it up for questions or suggestions. We have kids with greater challenges than Chance in our church and sometimes, we feel a little timid to bring up that we have a child who is deaf, because he is doing so well now and our issues are not the same as some of the other parents. But, Chance's journey to get to where he is has been a very involved one that required lots of time, effort and people. We know a little bit about working with a child who has a challenge. We've worked our tails off, as have teachers and others who helped along the way. And, Chance is not healed. He is still deaf. He does not hear everything and sometimes, little things like a game of "Name That Tune," in church can be frustrating for him because by the time he has heard enough notes of a song to know what it is, other kids have been chosen to come up and guess the next song. Chance also does not hear everything and sometimes will pass by someone who has said "hi" to him in the hall of church because he has not heard them due to all of the noise in the hall.

We have found that doing simple things like making sure that Chance can hear us in noisy environments, pointing out to him when someone has said "hi" and he did not hear them, and giving him his own song book so that he can look at the words to a song for as long as he needs makes a big difference. I wouldn't want anyone to get upset because Chance did not respond to them in the hall, or expect him to know the words to the songs before he is ready.

There are people who will always hold a very special place in my heart for how they interacted with Chance when we first found out he was deaf. This was back when Chance did not have a lot of language skills and could not respond to you if you talked to him, or even when we knew what his possibilities were going to be. He also did not hear things quite often. But there were those angel people at church, among our neighbors and family who by the smallest actions, let Chance be a part of things.

Some family members would pull Chance onto their laps and engage him one on one during family gatherings, ensuring that he did not get lost in the mass of family.

One man at church had the last name of Bird. He asked me how you sign bird and then he did the sign for bird and when he greeted Chance, they would do the bird sign together. This man also sat by Chance when he was nervous in class and became quite a buddy to him. At one point, when we were at a church meeting, Chance suddenly left his seat and walked to the back of the room where he gave his "bird" buddy a hug.

Another woman we knew would tap Chance gently to get his attention when he went by her, then she would greet him with a big smile and say "Hello Chance!" She did not let the fact that Chance did not hear her like the other kids, stop her from interacting with him.

Then there was the week that the leader of the kids at church and I taught the kids about kids with challenges and talked to them about what Chance's hearing aids were and how they helped him to hear. I took pictures of Chance and his brother with several other kids in the neighborhood playing and we taught the kids a song called,"I'll Walk With You", which is about how even though you don't talk, walk or act like most people do, I won't walk away from you. One line of the song goes,"If you don't talk like most people do, some people walk away from you, but I won't! I won't!" When I was teaching the kids that song, I didn't know if I would be able to make it through the song with out crying. I was just so touched by the message of the song, and it was so important to me that my little son be given the chance to participate with the other kids and be loved. Just this past week, Chance told me that,"I'll Walk With You," is his favorite church song.

The librarian at Chance's old school told me what a sweet boy he was and made an effort to talk to him at school.

These people are angels to me. They reached out and loved my son at a challenging time for him. They worked to understand him and interact with him. I will love them forever for that.

The love of a brother

Chance just loves having his new ipod to listen too. He has been going around the house singing songs he is learning. While Chance is getting many of the words to songs, he also misses words or does not hear them quite right. Sometimes, he will ask me, "What word comes after way?" etc.

Well, one morning this week, Chance's brother asked if he could type out song lyrics for his typing assignment. The kids are all learning how to type and they love the games they can play so I was a little confused as to why he didn't want to do the typing program and told him to wait until after breakfast.

Then with an urgent whisper, he said,"I am typing out all of the words to the songs on Chance's ipod for him as a surprise so that he will know all the words to the songs! Chance is still asleep and I want to work on it before he gets up." Then I realized that he had Chance's ipod complete with ear buds dangling from his neck.

Ahhhh! Of course I let him type out some songs! What a thoughtful gift. I am sure that Chance will greatly appreciate such a gesture. Knowing Chance, he will hold the lyrics to the songs in front of him and read them while he listens to the songs so that he learns the words.

"Do you think I should type up all the ohhhs, ahhhhs and echos that are in the songs so that Chance knows those too?" Chance's brother asked me later in the day.

After thinking a moment, I told him that would be a good idea since that would help Chance know exactly what was being said in the songs. He'd be hearing those background sounds, and wonder about them I reasoned.

So, in parentheses, Chance's brother is putting in background vocals so Chance can tell the difference.

What a thoughtful brother. This kind of spontaneous gesture of thoughtfulness between my kids warms my heart. Chance's brother really has been a blessing to him. He watched out for Chance when he was first diagnosed, has helped him through his journey of hearing loss, and now, he continues to think of Chance.

Chance is going to love this!!!

Saturday, January 30, 2010

Another child fails the hearing test

Chance's sister is one of those poor babies that has struggled with ear infections on a continual basis since she was just a few weeks old. We had tubes put in her ears when she was just 3 months old since we know how this situation works. We have other children that have benefited tremendously from having tubes put in. They suffer greatly until we can get them some tubes to help drain their little ears. Number one, they don't have to be on a constant stream of antibiotics to get rid of the infections, and two, they can finally get some decent sleep. Ironically, Chance was not one of our children who had serial ear infections. No, his ears were just fine, until they stopped working one day.

Chance's sister has been struggling with ear infections again despite the tubes, so I took her to Primary Children's Hospital to our good doctor who has helped us out many times before with ear issues. Our Primary Care Physician suggested that we go see an Otolaryngologist (Ears, Nose and Throat doctor) since the infections were coming frequently again. I was sure that she had an infection when we took her to the ENT as all of the signs are there, and she has been tugging at her right ear.

There is no infection and the tubes appear to be working so far as we can see right now. The doctor suggested we get a hearing test done which I am glad to do with my babies just to make sure that all is well. The left ear was well. The right ear failed the test.

Wow. We've heard about a child failing hearing tests before haven't we? It is funny, but while we were in the booth, I just felt that her ear was not going to pass so when the audiologist told me I wasn't all that surprised. The audiologist had a new Nucleus 5 implant box sitting on her desk when I walked in, so I had asked her a few questions about it and that led to me telling her that I had a son with bilateral implants. I think the fact that she knew that I was experienced with hearing loss, made it a little easier for her to tell me that the right ear failed. There was no need to explain what it could mean and I didn't go into shock.

I was surprised though I must say. This makes things interesting. It may just be that the tube is malfunctioning and the doctor just can't tell yet since there is no infection in the ear to check how it is working. It could be scar tissue or just something else we can't weed out yet. It is more rare to have hearing loss in just one ear, but it does happen.

The plan now is for us to head up to the doctors office as soon as we suspect an infection so that he can check the tube. If the tube is not working, the doctor will go back in and replace the tube and do some hearing tests while he has her there. If within the month, there is no infection to check the tube, we will go in for an ABR(auditory brainstem response) test to check her hearing. This is the same test that Chance had that let us know he was deaf. The baby is obviously too little to raise her hand when she hears the beep in the sound booth, so the ABR is a good method to check her hearing.

How would I feel to have another child with hearing loss? Well, we have been there and done that. This is both a plus and a minus. We know what we are doing, but then again, we know the work that would be ahead. Actually, we are a lot more informed now and we know what needs to be done, so in that aspect, it would be much much easier should we enter the land of hearing loss again with another child.

It was interesting having her one ear fail the test. We just need to find out WHY she is not hearing in that one ear. Of course, now that we have this information, we as her parents have been testing her hearing. We call to her from both the right and left side to see if she seems to hear us. We look at her right ear a lot since we may discover some sort of clue by doing this:)

I told Chance that his sister wasn't hearing with her right ear and he then told the other kids that she was deaf like him. I think he was a little excited about that, to have a deaf buddy in the family.

Chance's brother came running down the stairs,'She's deaf?!" He asked breathlessly. "Chance says she's deaf!"

We cleared that up right away, and now we just wait to see what we can learn about what is going on inside of that little right ear.

Wednesday, January 20, 2010

What Chance wants to be when he grows up

Chance is doing a writing program in school where he will be writing various articles for a newspaper. Today was the day he filled out his application for the job. He gets to choose if he writes sports stories, national news, or world events. In due time, he will write a story for each of these categories, but today, he had to apply for the job.

Chance had to answer various questions about himself....what is his name, where does he live and his phone number. He also had to write down the names of two people he knows who have done something interesting recently.

His answer to the question of "What does your mom do for work", was cute. He put down "favorite helper." I'll take that.

I was amused to read what Chance listed as the three things that he wanted to for a living. The question was actually asking what Chance wanted for compensation since he would not be getting any money for writing for a made up newspaper. Chance interpreted the question wrong since he didn't know what the word compensation means.

Chance put that he wanted to be a veterinarian. This could be a good career for Chance as we established when he cut his finger that he is not faint of heart when it comes to seeing blood and guts. Chance's finger required many stitches and when the doctor was sewing it back together, he actually took scissors and cut off pieces of fat that could not be squeezed back into the finger. I tried to distract Chance so that he would not sick out but it became apparent, that watching body parts being put back together did not phase Chance. Even if the body part was his own.
Chance also wanted to be a "rain forest animal autographer". I wasn't sure exactly what that was, but Chance was so serious about his choices that I tried to figure out what that could mean. Turns out, Chance meant "rain forest animal photographer." Sounds like an exciting career. Then his mother could come and visit him in exotic locations across the globe.

Chance's odds of getting hired for the job are pretty darn good considering that he did a great job on the application. We'll have to see just what kind of stories Chance conjures up over the next several weeks.

Thursday, January 14, 2010

Chance gets in ipod

Reflecting upon Chance's love for music, his desire to sing, and his willingness to learn new songs, we came up with a brilliant idea. Why not get Chance an ipod and put songs he wishes to learn, or songs that he will be exposed to at church etc. on an ipod so he can have lots of extra exposure to them?!
Chance was not expecting an ipod so he was truly delighted when we handed him one. He was pretty excited about putting songs he was trying to learn on it too.
Chance likes to put on his ipod while he does his jobs around the house and cleans his bedroom.
He does not use earphones of course as you have to have a working cochlea for that to be effective. No, Chance uses a NoiZfree telecoil adapter. This just hooks over his implants and sends an electromagnetic signal directly to his processor. We have had many comical moments around the house as Chance uses his ipod. He switches the setting on his implant when he is wearing his ipod and he can not hear us. So, we call, and we talk to him and Chance just goes about his business listening to music blissfully unaware of our attentions. I have to remind his siblings that he can not hear them, so they can stop attempting to convince him to look at them or tell him something.
The other day, after I had just told Chance something, I called him back because I remembered something else I needed to tell him. Chance had just put his ipod on, so he could not hear me.
"Tap Chance to get his attention." I told his brother as he walked by.
Chances brother reached out to touch Chance, but he was leaning way over and ended up touching Chance harder than he planned.
Chance was stepping over something at the time so one of his feet was in the air. Thus the touch caused Chance to fall over onto the floor. He was understandably quite shocked to find himself on the floor and initially accused his brother of pushing him. It was quite a pathetic sight, Chance, who is not hearing anything laying on the floor a mix of surprise, hurt, and accusation on his face.
I explained to him that his brother had not meant to knock him over and that I had asked him to tap him. It just turned out to be more of a tap due to circumstances.
There is a setting on the implant that allows Chance to hear both the music and the things around him, but it splits the hearing. Part music, part surroundings. Chance does not like this setting as well though. He will use it, but he says that he prefers to be able to have all of his hearing going to the music. What? And miss out on the beauty of our voices?
Oh well. Chance is really enjoying the ipod and is delighted to have songs on it that he wants to learn better.

I didn't really know what they were talking about....

As is our custom on Sunday after church, we asked the kids what their lessons had been about that day. Chance informed us that his lesson had been the same as the week before because he had a substitute this week. She must have got her lessons mixed up I guess.
Then Chance proceeds to tell us,"I answered lots of the questions. Last week I did not know what they were talking about, but this week I do."
This was news to us that Chance had not understood the lesson last week, so I said,"Chance, next time when you don't understand the lesson will you tell us?"
Chance looked at me kind of funny and said,"O...k...a....y." It was the okay that really means,"I don't know why you ask this of me, but whatever."
Then he asked, "Why?"
There are so many places to go with this question. I thought, "Well, you actually should know what is going on and if you are missing out on concepts because of unfamiliar vocabulary or you don't hear for whatever reason, that should be addressed."
We told Chance that if he didn't know what was going on he should tell us. We'll just wait and see now if he reports anything.
Good thing the substitute repeated the lesson!

Friday, January 01, 2010


Chance's little brother has been trying to tell anyone who will listen that he is now big. If you call him little, he will very matter of factly inform you that he is not little. He is big.

Today, he came forth with proof to show us all of the metamorphosis that has occurred to make him big. He can snap his fingers. "You have to be big to do this," He informed me as I stood doing the laundry and he proudly snapped for me. I agreed with him that you did indeed need to be big to snap your fingers and he beamed.

Later, when the family was all gathered together that evening, Chance's little brother snapped so the whole family could see how big he is. As he snapped, we all clapped. Except for Chance. Chance was coming up from behind, quizically looking at his brother's fingers. The snapping is not all that loud, in fact, it is quite hard to hear at all sometimes. Chance stared at the snapping fingers, looked at the rest of us and then turned to me as if to say,"why are you all clapping?"
"He can snap his fingers now." I told Chance as his brother beamed up at him.

Ever the sweet brother that he is, Chance started to slowly clap and smile at his brother for his accomplishment.

I don't think Chance heard the snapping, but he was happy that his brother could snap all the same:)

Chance gets doorbell ditched...

Some of Chance's siblings thought it would be a swell idea to doorbell ditch the house while Chance was sitting in the living room.(where you ring the doorbell and run).

It was dark outside when the doorbell rang and Chance threw open the door anticipating who could have come to visit us.

Chance stood there with the door open, staring into the darkness. Then I heard him say," I can hear, you know. I hear you talking."

With that, he closed the door and came back into the house with disgust written all over his face.

Ahhh! It is just not that fun to hide from your deaf brother when he can HEAR you out in your hiding place in the yard!