The Story Continues at the Town Home...

Yeah! The movers didn't take my computer away this weekend! They have to finish the packout by Monday, so it will eventually be packed. IF the house closes in time we may get a laptop. We'll see...

Not long after we arrived, we figured out that the Town Home State was exactly what The Doctor ordered for our family. I was told that there was a large deaf population in the immediate area. Folks everywhere seemed to know sign language. Instead of staring at that weird thing on my kiddo's head, they would come right out and ask, "When did your son get a cochlear implant?" WHAT? They knew what it was? I'm not kidding, that was really cool. They loved to ask Matt questions orally and see how he was doing, too.

I met one great lady at church, and her CI son. I also met another lady at the library, and she has since become one of my all time best friends! We were looking at some of the same books, and got to talking. And I don't know if I was surprised or not by then, but her son was also going to be in Matt's class, too! Never in a million years would I have thought we'd settle into "Hicksville" so smoothly. :)

Once the school year started, we finally sat everyone down for Matt's first IEP. And when I say everyone, there had to be at least 12 folks in that small meeting room! A very involved team, with every possible resource represented. I'll never forget their first question, "Mom, what are your long term goals for Matt?" I smiled and answered, "I want him to grow up happy and healthy, become independent and move out someday." Brief silence and then they all broke out laughing. I have a sense of humor, but this wasn't exactly meant as a joke. They explained that they wanted to know what my long term EDUCATIONAL goals were for Matt and how they could help him achieve those. My response, "I want you to help educate him so he can be happy, healthy, independent and move out someday." BIG GRIN! This time I meant it as a joke, but I still didn't have a clue what they were really wanted. They were very open, explained things well. After hearing so many scary IEP stories, I was pleasantly surprised at how well this one went.

Matt had to be tested by them, a new school system with good, thorough testing. I told them that the numbers on all these tests didn't really bother me as long as his progress kept moving forward. We did identify his strengths and weaknesses, and developed a plan of action.

But something stuck in the back of my mind. At that initial meeting there was a representative from the School for the Deaf. It was explained to me before the meeting that she would be there, even though I had already decided to not send Matt to that school. Professional courtesy, and they worked hard to make sure ALL options for Matt were presented at the meeting. Boy, am I ever glad they did that! At the very end of the meeting, the SFD rep mentioned a hearing peer program they were working on at the school, and the excellent speech therapist that would be on staff. HEARING PEER program at the School for the Deaf? Matt's old School for the Deaf was doing that, too, I think! How cool! Not what I expected from that school. I decided it couldn't hurt to check out the program.

Once Matt was settling in in his public school program, I took him to visit the SFD. Within seconds of entering the building, jut by watching Matt, I knew he had to go to that school. It reminded me of his old school, but had resources they could only dream about. It was so perfect inside, I had to hold back the tears. Matt was checking out the classroom and seemed as if he had found his "home". What an eye opening experience, I was SO GLAD I had opened my mind to all the options that available for Matt.

So we were at the Town Home, and life couldn't have been better! Matt was bused to the SFD in the morning. He was usually in a small group that was stronger in oral skills. His speech therapist ended up being a specialist of sorts in oral motor skills, helped him "find" his k, hard g and c sounds. The classes went on so many field trips it was amazing! After lunch Matt was bused to the public school half-day program for deaf/hoh kids. I chose to keep him here, too, as he had to get used to public school classes. Who knew where we'd end up next? AND I loved the speech pathologist there. She's the one who had over 10 years of experience with CI kids. As a matter of fact, we lived in the same town home building as her first CI student! That boy became sort of a hero for us, he was a perfect example of what we wanted for our son.

I became really good friends with yet another mom from Matt's class. Her daughter is hard of hearing, but has other medical issues as well. I grew to really respect and like this mom, too, because of her strength and coping skills with multiple kids. In reality, I liked her most because she made me feel like it was okay to feel bonkers when the kids drove you nuts. :)

Oh, I hated the thought of leaving the Town Home. But before we were to leave, I had another son, Joshua, my "little angel". Considering at one time we were thought to be infertile, we felt especially blessed to have yet another son. As you already know, Josh is deaf, too. I'll start his story with the next post. My boys are a perfect example of how each child is so unique, even in the same family.

One year post activation we move to the Town Home.

Okay, I know there's more to Matt's first year of activation, but we'll get back to that later. For now, I need to move forward with the story. Don't worry, my scatterbrained mind will pick up the pieces latter. :)

Matt's first year post CI activation went real well. He was three, progressing well, in an excellent all day school program, we were really starting to settle down in our "new" life. Pieces were falling into place. And then Hubby's job stepped in. They had seen fit to promote my husband and move the family. We were moving to the Town Home.

"WHAT THE HECK IS OVER THERE? You mean I have to drag my deaf kid to a new home for a stinkin' year while you go to school? Where will HE go to school? What kind of doctors do they have there?" I had many questions, we had no answers.

The army was looking out for our best interest, and sent us to to check out the area. See if it would meet my son's medical and educational needs. This is available through the Exceptional Family Member Program, and is approved on a case-by-case basis.

I was not thrilled with the first school system we visited. It lumped all of the children together, not disability specific. There was no real deaf ed for my son in that program, rather an itinerate deaf ed teacher that could visit the class on a regular basis. Whatever that meant. Matt was used to and benefiting from extensive speech and communication therapy, in a strongly oral TC program. I could not put him in an environment that I considered such a huge leap down from what he already had.

The schools did not allow children to bus from one district to another for a better program. They also discouraged against "school shopping" for the what we considered the best for our son. I think someone even told me that was considered "illegal". Huh? I told her that it would be a waste of my time and hers to live in her district, spend the whole year with me forcing her to provide appropriately for my son, and then have to move to another state. Not to mention a possible year of my son's education wasted. So we kept looking at other schools.

We looked at two other programs and an oral-only school. We finally settled on a public school, half-day, deaf/hoh program. Two factors were key for me at that time: Matt's teacher would be a man, possibly a good role model, and the speech pathologist had over ten years experience with habilitating CI children! Sold! I was warned against and absolutely under no circumstances would look at the state School for the Deaf in Olathe. At that time, anyway. More on that later...

We settled into the Town Home some time before school started, and were bored. We didn't know anyone! Here we were--transplanted from a fast paced locale where rude glares at my son's head were the norm, to Hicksville, USA, where strangers would not only tell you the time of day but then proceed on with their life stories! Who were these people? Again, WHAT IN THE HECK WERE WE DOING IN THE NEW TOWN HOME? Not much TO do. We spent a lot of time at the library.

Matt missed his old friends big time. It was so hard to take him away from a warm and comfortable place to "Quiet Country" with no friends but Mom, Dad and Baby Brother Christopher. So finally I decided to go to a church around the corner, just to meet some other people. Actually, I went to church only during Sunday School so Matt could meet some other kids.

I had checked into the church, stopped in earlier for a visit. The lady who ran Sunday School told me there was another boy there who was recently implanted, and would be in Matt's class. No way! She didn't think he'd be there that day, though, because he had been absent since his surgery. Maybe he was still healing? So we went to class. I decided to hang and translate for Matt, so he didn't feel so alone and lost w/o friends. He was one year post implant, understood quite a bit of vocabulary, but still needed some help to follow what was said.

So guess who walks in? The other Implanted Boy and his Mother!!!!! No kidding! I knew immediately who they were, jumped up and introduced myself. Her son was just implanted with the same implant Matt has, and was going to be activated the very next day! This was so cool, we were hopping up and down, practically shrieking! Crazy ladies, yes, but very excited to find our own little support group. Our sons were not only in the same Sunday School together, but they would be in the same class when the public school year started!

We were just talking about this when something even stranger happened. Someone else came to visit that church for the very first time, right then and there. He was coming to the class to drop off his daughter for HER first visit to Sunday School. Believe it or not, it was Matt's future school teacher! I am absolutely not kidding. We gals were so excited I think we freaked the poor guy out. But it was such an amazing morning! In a short time I had made a friend, my son had a peer and buddy, and I had met Matt's future school teacher!

I'll write more about the Town Home State later. It turned out to be an absolutely wonderful year. The folk were so nice it took me months to figure out that their kindness was genuine. I'm not saying people at our old place weren't as nice and kind, but the new place was a completely different world. A few of the ladies there became some of the best friends I've ever made, Matt ended up with top notch medical/CI care, and the schooling was better than I could have ever imagined. This was not what I had expected, but it's the something I still miss today. :)

And now a word from Matthew...

Mom: What do you like about your CI?
Matt: It helps me great because it helps me to hear. If I didn't have my CI I couldn't hear airplanes, the people talking to me, music at night, the water dripping on stuff. Drip drip drip.

Mom: Do you listen to the words on TV?
Matt: Yes. Sometimes it's kind of hard. Like when they talk fast. Or when Chris is yelling. I like to watch Teen Titans and Scooby Doo.

Mom: Do you like music?
Matt: Yes. I liked my music teacher at school. I bring an old music book to music class. Then at the end, when we have to go back to our classroom, she plays some music out of my old music book. I like any kind of instruments. I would like to play the guitar someday.

Mom: Do you like to yell at your brothers?
Matt: I like to yell at Chris sometimes. Sometimes Chris likes to yell at me.

Mom: Aren't you glad you have a CI and can HEAR Chris yelling at you?
Matt: I hate it when Chris yells at me!

Mom: What else do you NOT like to hear?
Matt: Josh screaming when he's mad. You screaming when YOU'RE mad. (he's smiling now)

Mom: Thanks a lot. :) How do you think your CI will help you later?
Matt: I hope that I have my CI forever because I like hearing.

Mom: How does your CI work?
Matt: The sound goes in here (microphone) down into the computer (processor), then back up inside my head. My CI helps me to hear.

Mom: Do you remember when you first got your CI?
Matt: Yeah. When I was three. I was scared of everything. I like hearing now.

Mom: Thanks, Matt.
Matt: Can I play games on the computer now?

Mom: Yeah, sure, Matt. ;)

Activated!

I had to read my last post to see where I left off. Activation Day. I am so glad I'm finally writing all of this down, because there's so much I'm forgetting! I think we did write some of it down, and I'm searching my hard drive for those files. If they're not on the hard drive, I think there's a printed copy somewhere, or a disc w/it on. I'll have to find it someday and share. For now I'll tell you what I remember.

I think someone told me environmental sounds can have fewer variables than speech, and that the ear learns to hear those simpler sounds first. Matt seemed to sense sound when the car was starting, when he walked near the dishwasher, when a helicopter was flying overhead (we lived on a tiny navy base, helicopters overhead were common). But one of the first things he seemed to enjoy hearing was his "piddle in the potty". :) He thought it was the funniest thing! It only took me a second to figure out why he was laughing. THEN he flushed the toilet and ran out of the room! He didn't like that sound at first.

Matt did have problems with tinnitus in the past, and I think he was a little frightened when he started hearing sounds with his CI. I remember him walking outside and immediately looking confused. He told me in his own way that he was hearing "bad sounds" again. He was hearing a group of Canadian geese in the green patch across the street! When I pointed this out to him his face was immediately plastered with a HUGE smile and he shot off chasing the geese!

The same thing happened with a truck down the road. I could not believe he heard it, it was two blocks away! But he did hear it, and again looked confused until he could put the sound together with an actual truck. Way cool.

I remember he was never really interested in the television until he had his CI. I used to sit and translate the kiddie shows in sign language so he could understand them. To this day I have a deep disdain for Barney that most parents will never truly comprehend. I steered away from shows with singing, more towards Blues Clues and Sesame Street. Visually Matt LOVED Junkyard Wars and some robot fighting program. Can't remember the name. But post CI he seemed to be taking everything in with his "new ears". Or new ear, CI, however you want to look at it. I started to keep the TV on all the time. For him, and for background noise.

Matt used to describe his tinnitus like a phone ringing, baby crying, dog barking, train whizzing by (through his head), helicopter flying, depending on the type of tinnitus he was currently experiencing. These descriptions were based on what he learned to hear with his hearing aids. Imagine his joy when he heard those things for real again! Clearly!

He very quickly learned to listen for the microwave beep, when his chocolate milk was done warming. And for knocks at the front door. We started a game where he would sit on one side of the door, I would sit on the other. When I knocked, he would open the door, or maybe knock back. I also remember knocking on the underside of the dining table w/o him knowing I was doing it. He looked so shocked at first! What was that? Then when he figured it out, he would start knocking on the table, too.

About a month into his post-activation, he started to recognize voices. My voice was first for him, and I think it's because I spent the most time with him. He did seem to get female voices in general, before he understood Dad and other male voices. About two months post activation, something just clicked in him and it was like he woke up one morning and decided he understood certain words. I don't know if this is normal, he seemed to progress so quickly. But he did have a hearing history with his hearing aids, and a little speech in the past. I think this helped him tremendously. When we started using speech post activation, I would sign the words for him, too. Kind of a bridge into the hearing vocabulary. Once I saw he was recognizing words, I slowly dropped the signing, moving him from the visual to the vocal comprehension.

I have his notes from school, and I'll have to dig them up to give you more specifics. But I think something clicked by month three, like he was understanding spoken commands. Basic ones, maybe. And I think he was really vocalizing better by month four. But I need to find the notes to help me with that stuff. I know right where they are, and I have nothing to do this afternoon but go through paperwork. Yeah...

But I can tell you that when he started calling me "Mama", using his voice, nothing could have sounded more beautiful. :) I have to remember that good feeling because now he's almost seven, and he'll now call me Mom. "Mom! Chris erased my rainbow!" "Mom! Chris unplugged the game!" "MOM! I want more chocolate milk!" So now I'm at the point where I'm thankful for his speech, but it's just not so cute, ha ha!

Activation.

I'm sitting here, with coffee of course, trying to figure out how to write about Matt's activation. It's such a momentous occasion, I'm not sure I can do it justice. So I'm just going to type it as it comes. Here goes...

Matt's CI surgery had healed and Activation Day was finally here. We had no idea what to expect. Of course, I had in the back of my mind that Matt would be hooked up and immediately hear sound upon the initial stimulation. We didn't have a clue. I went into the hookup room with him, I think an audie and maybe even two. My hubby and some other family sat in another room but could watch through a window and TV feed.

Matt was then "hooked up" and they started the stimulation. I think the first sounds he "heard" were directly from the computer, maybe clicks I can't remember, but not from his microphone. They started their testing, and there was absolutely no response from Matt. Not that I could see, anyway. I was crestfallen, crushed. It was only a few minutes of testing, but it felt like forever. I finally asked the doctor (I think he was there, maybe it was an audie) what happens if his CI doesn't work, at least we tried it. Right? I was trying not to cry. After everything we had been through, all of our hopes for Matt, it was hard to swallow that the CI wouldn't work for him. The doctor had told us in the past to have high hopes, low expectations. In other words, be realistic.

But he told me right there that Matt WAS responding to the sound. Matt was not moving an inch, not even flinching. But when they piped the sound from the computer to his CI, Matt's lily white Irish face would immediately flush beet red. When the tone was done, his face would go back to pale. Again and again and again. Matt just sat there with a very slight confused look on his face. Not scared, just not sure what to think about what was happening. His brain was getting the signal, just not certain what to do with it yet. I was ECSTATIC!!!!! I didn't want to interrupt the testing, but watching Matt's face as a response to the sound, I wanted to jump and scream and shout YIPEE! I couldn't believe that his little boy brain was getting sound input! FINALLY!!!!! And then I wanted to cry because it was at that moment that all of the testing, all of the decisions we had to make, all of that just washed away, melted into the past. Matt's hearing future was just beginning.

After a little more testing, they finally unhooked the computer and exposed Matt to sound through his microphone. For the first time. THAT was when he looked a little confused. He didn't seem scared, just confused. We decided to keep his volume low, then work him up in volume and input as he grew accustomed to his new implant. I walked out of there on cloud nine!

We gathered up all of the boxes, equipment, paperwork, got the family together and went out to the minivan in the parking lot. Buckled Matt up and started the engine. THAT was when he freaked out--by the sound of the minivan engine! He immediately went to tear off his CI, but I wouldn't let him. I told everyone in the van that he was keeping his CI on. We didn't come this far to let him take it off when he felt like it. That would be a bad habit to get into. I turned the volume down, but he kept his CI headpiece on after that. It didn't take long for him to calm down, either. He just seemed to be taking everything in.

I've always wondered if he could hear his own screaming after he heard the motor start up. Did his brain hear the screaming? Was THAT loud to him? It sure was to us. I kind of wished (and have wished through the years) that I could turn down my volume, too, ha ha!

Well, I need to get on with my day. I'll try to type more about his initial experiences. I think we DID put some of that down on the computer, like a journal that may be on our hard drive, in a folder somewhere. I'll try to find that and put in excerpts when appropriate, too. Way cool to be putting this all together!!!

My son just called me on the phone.

No joke. Matt is away at camp this weekend with his Cub Scout group. He just called me on a cell phone and we had a conversation with me on the cordless phone. Clear as a bell. He told me it was raining and the tent he was in was leaking a little. That they might sleep in a truck later if things get much worse. I asked and he told me he was behaving. :) And that he had walked all day and his legs were tired. And that he saw a llama! I asked him about that, and he said it was a real llama.

I just talked to my deaf son on the phone. He was only holding the cell phone up to his headpiece. I am humbled to tears by the technology he has available to him.

When my husband was in Iraq (deployed for a year) he would call home and talk to us. Matt included. My hubby would be on an Iraqi cell phone, or some reporter's phone, and Matt would be back home on our cordless phone. I would turn the volume up to max and Matt would hold it to his headpiece (we need a T-mic!). After he was done, and I'd have to literally pull him off the phone, my hubby would be choking back the tears. I've talked with Matt on the phone before, but tonight it was especially clear, the phone reception, as well as his reception and speech. He has had his implant for over three years now, yet I am continually amazed by what the CI has made available to him.

I just had a conversation with my deaf son on the phone. I don't think I'll ever stop being amazed by that.

Pre-CI Audiogram

Well, I've scanned it in and figured out how to post it. Yeah! Let's look at this. Matt had some residual hearing in the low frequency range. Very little. His cochleas are not fully formed, so we expected the high frequency to be bad from the start, no surprise there. He only has 1.5 turns of his cochleas, vs. the usual 2.25 turns, I think.

Now it looks like he was doing better with aids. Of course he was! But while he was detecting sounds at those ranges, he was not discriminating those sounds well at all. As one deaf adult told me, hearing aids amplify sound, they don't make any discriminations. Matt's perception of sound was probably amplified noise at that point. Matt tested very well in the sound booth, and with any other test that was given to him. What little residual hearing he once had was rapidly going away, we saw the cochlear implant as an excellent option for him.

This audiogram was done just over one week prior to his CI surgery. I have to go through paperwork this weekend, maybe I can find reports post CI activation. That might be cool, eh?