Update And First Piano Recital

It's hard to believe that we last updated this blog over two years ago!

During that time, Drew's mom and I have continued to get private messages and see comments come through on various posts and videos, some of which are now 10 years old. Most of the communication is positive and we continue to be grateful that readers find the material on the blog valuable.

Because you've asked, here is what Drew (now age 10) is up to these days.

School

• 4th grade
• At or above grade level in every subject according to teachers and state standardized testing
• Only significant accommodation he receives is his personal FM system

Sports

• Fall: Football
• Winter: Travel basketball and rec hockey
• Spring: Travel baseball and rec lacrosse (lacrosse last year only)
• Summer: Golf

Music

• Piano (lessons for last 8 months)
• He wants to play guitar next year
• He loves watching his sister perform in musical theater and plans on auditioning for his school's 5th grade musical next year

Miscellaneous

• Recently has begun enjoying reading in his room
• Makes friends easily

Here is a video of his first piano recital:



What else do you want to know?

He's Off!

School has been underway for nearly two months, and I'm happy to report that Drew is doing very well in the mainstream setting. Other than a couple of issues getting his teachers and support staff used to his personal FM system, the start of Kindergarten has gone exactly as planned.

Drew has enjoyed making new friends, and asks to have a new friend over for a play date nearly every week. His favorite part of the school day is either gym or recess, depending on the day. Drew is reading. He has math homework. He has been superstar and shared stories with the class about his crazy family. He loves being at the same school with his sister.

Our life with a Kindergartener is so normal. Just how I prayed it would be.

Cochlear Implant "Booth" Testing

We recently had a mapping appointment for Drew's cochlear implants. At nearly five years post implant, we see Drew's audiologist about every six months, just to make sure that he continues to hear well and that his equipment, both internal and external, is working optimally.

I was able to capture this video of Drew in the sound booth. I thought it would give you an idea of what hearing impaired children go through in order to be able to hear. I can not tell you what an awesome job Drew does in the booth. His ability to perform conditioned play during pure tone testing is amazing (although he prefers making baskets to doing a puzzle), and his stamina is unlike any child I know. He can sit in the booth for just about one hour providing us with detailed information on just how well he is hearing. Quite honestly, I attribute a lot of his success with his cochlear implants to his ability to perform in the booth because his audiologist has all of the information she needs to properly program his implants.

This mapping appointment was unique, as we begin to peruse options for Drew's transition to mainstream Kindergarten. During this booth test, we were really looking to get a good idea of how well Drew hears in noisy situations, and his potential need for an FM System. You will be able to see how difficult the noise testing is. On the NU-CHIPS test, without noise, Drew scores nearly 100% every time. In a sound to noise ratio of +10, Drew's score drops to 80%. Now, this is still a really good score, but this testing does not take into account degraded listening situations, for example when noise, distance and reverberation are all present, which occurs in auditoriums, cafeterias and even classrooms.

We determined that we are going to use an FM System with Drew next year, bilaterally. This will provide a clear path for the teachers voice to reach Drew's ears, and will eliminate any possibility of a noisy classroom effecting his learning. There will be many situations where Drew will not be using an FM, at home, during his sporting activities and daily life, so we don't anticipate that his ability to listen in noise will diminish.

Four Years

We awoke on a beautiful, sunny morning four years ago today, knowing that our son would hear his very first sounds at his cochlear implant activation that day. We knew that the real work would begin that day. We knew that we would be deeply involved in speech and auditory training for the foreseeable future. We knew, no matter what may have crossed our path, that it was the beginning of our sons road to talking and communicating with his family and the world.

What we didn't know four years ago was how remarkably normal our life would become in this short time. That therapy appointments would really become a distant memory, a thing of the past. We didn't know how naturally hearing and speaking would come to him, but it did, and with his cochlear implants he has soared. Four years later our summer is filled with t-ball games where Drew can hear just like his teammates; it's a summer filled with trips to the pool where Drew can hear in the water. It's filled with everything that a little boys life should be filled with.

What we didn't know four years ago was that Drew was clearly born to talk. Happy 4th Hearing Day to our Drew.

New Sounds

As we sat in a restaurant on Sunday afternoon, eating our lunch, Drew leaned over to his Daddy and said, "What's that sound?" After pausing for a moment, we realized that Drew was hearing the sound coming from the hand-held soda machine a bartender was using.

We weren't really shocked that Drew heard the sound, as we were sitting fairly close to the bar. But we were surprised that he isolated the sound in a crowded restaurant, and recognized that he didn't know the sound, and was so intrigued by it that he just had to learn what the sound was.

Nearly four years later, and I'm still seeing my little guy hear new sounds for the first time. Pretty cool.

Language Sample - Four Years Old

I've taken a little video of Drew over the past few days, to give you an idea of how Drew is doing with his language. He will turn four years old this month, and has had his Cochlear Implants activated for nearly three years, three months.

It is really hard for me to believe that this whole hearing journey began nearly four years ago. If only I would have known then, what I know now. It would have saved a lot of tears.

Whispers

It's not unusual for Drew's Dad and I to find ourselves whispering to each other quite often, especially when we are driving. While whispering is often considered rude, when you have two young children, you find yourself whispering quite often. Why talk aloud about going for ice cream when you aren't sure your spouse is in agreement? Can't discuss the possible trip to the pool for fear of someone getting over excited. The list goes on.

As we drove home from a trip to the park the other night, Drew was behaving quite poorly in the car. Really, he was out of control crying and whining over something. I can't even remember what he was crying and whining about - that's how important it was. After several requests to stop whining, I told Drew he would be placed in timeout when we finally made it home.

Drew, being the master at manipulation, began saying "I'll stop. See, I'm stopping. I'm not crying any more." He continued this speech over an over, in a super attempt to keep himself out of the dreaded timeout.

Drew's Dad and I began our whispering, in this case about parenting. We were discussing with each other the fact that we had already told Drew he would get a time out, and that he couldn't get out of it now. Just making sure we were both on the same page.

As we talked we started to hear Drew in the back seat talking louder and louder. To us. He was saying, "Hey, stop talking about timeouts! Stop talking about timeouts! Mom, Dad. Stop talking about timeouts."

Drew's Dad and I found it hilarious. First, it was quite hilarious that he heard us talking, and knew what we were discussing. But hearing his sweet little voice tell us that we should stop talking about his timeout was just precious.

For the record, Drew did receive his timeout when we got home. Although it wasn't nearly as long as what it should have been. He's just too darn cute.

Dining with Drew

We celebrated Mother's Day with a dinner out at one of our favorite local restaurants. We had a rather large party of 10 to celebrate the day, at a very busy, loud restaurant.

When we took our seats we didn't give much thought to the seating arrangements, other than the fact that Drew and his sister were required to sit by either me or their Daddy. Sometimes restaurant behavior can rapidly deteriorate without a parental unit nearby.

Anyway, Drew sat with his back facing the center of the restaurant. And he would not stop talking. The entire night. Didn't matter if someone else was talking at the table, his mouth was moving. And he was talking. Loud. To the point where he was wearing on my last nerve.

Then it dawned on me - he couldn't hear. I leaned down and asked him if he could hear, and he said "No, it's too loud," and popped both of his ears off.

Lesson learned. Drew needs to sit as far away from the center of a noisy restaurant as possible. And I need to talk with his audiologist about getting some additional mapping programs for noisy situations added to his processors. Now that he is able to tell us with more accuracy how he is hearing, I think we can give these additional programs a try.

This is the first time in quite awhile I have really noticed his hearing compromised by noise. I think it's time to see his audiologist.

What Does the "Wrong" Ear Sound Like?

On rare occasions, Drew's Dad or I will accidentally put the "wrong" ear on Drew. We'll put his right on his left or vice versa. Each of Drew's processors is specifically programmed for an individual ear. For some CI users, their programs on each ear are nearly identical, so mixing them up won't create too many problems. Sure, hearing won't be maximized, but there isn't any tell tale sign that there is an issue.

That's not the case for Drew. His maps on his two ears are quite different. His right ear requires so much power that we actually had to go to a wider pulse width than his left ear. As a result, mixing up his right ear and putting it on his left causes him pain. It is "too loud", as he has told us in the past. And we always know when we've put the right ear on his left because he cries out in pain.

Now that Drew is a bit older, we were able to ask him after this most recent mix up what putting on the wrong ear actually sounded like. Here is Drew's response:

Language Evaluation

We received some very exciting news today upon the completion of Drew's latest language assessment. At 29 months of age, 20 months post bilateral cochlear implantation, Drew tested at 40 months of age! Woo hoo! This test is for typical language development, and in no way takes into account his late start. He is ahead nearly one whole year! Drew's parents are full of excitement this evening.

I have been corresponding with a mother who just learned that her son has profound hearing loss. I so clearly remember those first days. All of the uncertainty. And although this mother lives a thousand miles away, we are forever connected by this experience. It is hard to know in those early days that everything really with be Okay. That life can be normal. My hope is that Drew's story provides comfort to those who have just learned, or will learn, that their baby is deaf. Happy days lye ahead.

I put together a new video of Drew. It's fairly short, but shows you some of his greatest loves: cars and sports. You'll notice that he is only wearing one of his implants in the video. Most evenings after bath time, we will have Drew wear only one ear while we do a little "therapy." We do this because it gives us a clear understanding of how well Drew hears with each ear individually. We know Drew hears very well with both ears, but we want to make sure that his individual ears are mapped appropriately, so it gives us a little insight on how well he is hearing. Enjoy!

All Is Well

I have been a bad blogger! But I guess everything is just so normal around here that I don't have much to say. I can only say that cochlear implants are truly a miracle so many times. The number of words Drew uses on a daily basis is in the hundreds, if not thousands, at this point, so keeping a running list for you is impossible. I just can't put into words how normal life is, how wonderfully lucky we are that Drew is able to hear and how rewarding it is to see our hard work pay off on a daily basis.

Our most recent efforts have been centered on our upcoming Preschool tours and the impending IEP process. We find great value in sending Drew to a hearing impaired preschool program (which I will blog on the "why" in a seperate post), and we are very fortunate that there are three programs in our area that specialize in teaching the hearing impaired. We have preschool visits scheduled for the first two weeks of February, and we will share with you our analysis of each program and our final decision. I have also been educating myself on the IEP process, and have much to share. There are many of us going through this at the same time, so I am hopeful that we can learn from each other how to secure the services best suited for our child and our families.

Drew continues to amaze us all with his progress. As I was putting him to bed the other night, he looked at me and said, "Mama, I wanna go to golf (golp) store and hit the ball in hole." 12 whole words in one sentence, and it's not surprising that his first 12 word sentence would involve something related to sports! The boy loves sports, probably more than anything else in the whole world.

This is just so, so, so much fun!

An Amazing Experience: Meeting MLB Pitcher Jim Abbott

On a recent trip to California, Drew's Dad and I met Olympic Gold Medalist and former Major League Baseball pitcher Jim Abbott. We were fortunate enough to attend a meeting my company was holding where Jim was the keynote speaker. It was such an amazing experience to listen to him speak about his ability to become a successful baseball player, against all odds.




Born without a right hand, Jim Abbott defied all of the odds to become a major league baseball pitcher. Despite being born with a disability, he truly believes that more has given to him than was ever taken away by his birth defect. He talked to our group about the need to A.D.A.P.T. in order to overcome our circumstances and achieve our goals:

• Adjustability: Thinking of a different way to do things, given your circumstances. For Jim, he had to make adjustments just to be able to tie his shoes. For Drew, we use a food saver to water proof his cochlear implants for swimming. No matter what the circumstance, little adjustments can make just about any situation work.
• Determination: We are constantly told about the things we can not do. If we start to believe that we can not do something, it limits our abilities. We must filter out all of the negativity in order to reach our goals.
• Accountability: Never let the circumstances of life be an excuse for not meeting your goals. You are accountable for your actions. Have you made the most of your talents today?
• Perseverance: At times, your goals may not seem possible. But so much is possible if you just hang on to your goal and keep working!
• Trust: The ability to know that you are prepared and can do anything! Bring trust into every situation! You can achieve just about anything if you trust in your abilities.

During the presentation, Jim demonstrated little adaptations he had to make in order to be able not only to pitch, but field his position. He showed us how he would get his glove back on after pitching the ball, in order to field his position. In fact, I was the one that got to play catch with him during this part of the presentation! Check playing catch with a New York Yankee pitcher-that-threw-a-no-hitter off of my "to-do" list!

This presentation was designed to speak to my inner "sales representative" soul, in a time of economic strife, but instead struck special cord as a mom of a child with special needs. There were points during his presentation where I could feel myself tearing up. What did Jim's parents do to raise such a strong, secure, determined son? How had Jim handled being made fun of for being and looking different? When did Jim learn of his disability, and what did his parents tell him about it? There were so many questions that ran through my mind. I wanted to learn as much as I could from him on how I can impower Drew to be self-confidant, determined, successful and proud of being different.

Fortunately, Drew's Dad and I were able to spend a considerable amount of time one-on-one with Jim, and were able to talk about our personal situation. We asked Jim if he could give us any advice on how to empower Drew. Jim told us of his Dad, and that one of his dad's key motto's to him was "Be a leader today!" Jim's Dad talked with him each day about the choices he had to make, and that if Jim was a leader, all of his friends and classmates would follow.

Jim also spoke of how being a part of a team, as baseball provided, was a great way to help him "fit in". He strongly encouraged having Drew participate and lead in team sports, which would lead to acceptance without questioning his differences.

If you believe in yourself, nothing can stop you, and then amazing things can happen. We left with an autographed baseball: "To Drew, Anything is Possible!" Jim Abbott

***Drew's Dad here...I just wanted to add this video in case one of you hadn't heard of Jim Abbott. Enjoy!***

Drew Can Say "Go Buckeyes"!

Last year we showed you how Drew Loves the Ohio State Buckeyes.

This year he can show off his "fanhood" even more by saying "Go Bucks!", and perhaps most importantly can express his thoughts toward "that team up north". Watch Drew in action.

Sounds of the Zoo

We are enjoying beautiful weather this Memorial Day weekend. Yesterday we went to the Columbus Zoo. It was our first trip to the zoo of the summer, and Drew certainly enjoyed the sights and sounds of the zoo! This is the first time that he has really been old enough to enjoy the animals at the zoo and we all had such fun making animal noises together!



We were able to ride the train, which Drew really enjoyed. As we waited in line he kept saying, "Choo, choo." It is so cool that he can talk! I don't know if and when the adrenalin rush that I feel every time Drew talks will subside. In fact, I really don't want it to.




Drew's Sister took her first pony ride! She was such a big girl, climbing on the horse and riding all by herself. I was really proud of her. Drew watched from the stroller, while making a tongue clicking sound the entire time.



We took Drew for his first ride on the carousel. He loved it! He had a smile on his face the entire time and when the ride stopped he started saying, "No. No. No." He was moving his body trying to make the horse move. When I told him that we had to say bye, he protested and threw a mini-tantrum. Drew's Dad and I laughed and laughed as we pulled our boy off of the horse, happy as can be that he can scream, "No!," at the top of his lungs! We enjoyed it so much that we took Drew for another ride, complete with the smiling and the mini-tantrum.


The Columbus Zoo has been completely remodeled and they have added a new ride area between it and the new water park, Zoombezi Bay. Both Drew and his sister had a great time riding on the rides. It is a really nice area with plenty of rides for toddlers. I have a feeling that we will be spending many days on the flying elephants, tea pots and train. They even have a tilt-a-world and scrambler, two of my favorites!

We hope that you have a safe and enjoyable holiday weekend and are enjoying time with family and friends!

10 Months Post Cochlear Implant Activation Video

We've consistently been updating you with stories of how Drew is doing: funny things, surprising things, etc. Well, here's the latest video showing how Drew's spoken language is progressing to this point (19 months old, 10 months hearing).

You'll see that he can respond to auditory commands, make some animal noises, sing parts of "Ba Ba Black Sheep", loves giving kisses, and can be very assertive at times!

For those of you who have CI children of your own, or have kids who may be getting a cochlear implant sometime soon, please remember that every child is different. Some kids will show more language development than Drew at the same "hearing age" of 10 months, and some will show less.

The road to maximize Drew's success with hearing and spoken language has just begun for our family, but we are happy with the way things are working to this point. We hope you enjoy.

Off and A Little Conversation

There are many times during a day when one (if not both) of Drew's coils fall off through play. Either from falling down, rolling around or running, it is inevitable that coils will fall off, thus leaving Drew with only one ear to hear from or in silence. In the past, we have relied on the little flashing lights on his ear level piece to tell us that Drew is not hearing. I find myself constantly looking at his ears to make sure that everything is working correctly. Now, we have a new way of knowing: Drew!

Drew now tells us when his ear(s) is off. He can even tell which ear is off, as he will bring his hand up to the ear that is off while saying, "off, off." While driving in the car yesterday Drew said, "Mommy." I turned to look at him while saying, "Yes, Drew." He then pointed to his ear and said, "Off." Drew actually knew to get my attention and then tell me that his ear was not working correctly. I found that rather amazing.

At dinner this evening, Drew kept pointing to his left ear while saying, "Off." I kept telling him, "Drew, you ear isn't off," because I could plainly see that the coil was attached to his head. Upon further investigation, the flashing light was off. I found that his processor had indeed turned off and that Drew was not able to hear. I need to learn to listen to him and investigate more thoroughly!

On another note, Drew is having fantastic conversations with us! I feel like he is really understanding what we are saying and he is conversing with us appropriately:

Me: "Drew, please stop pushing your sister."
Drew: Continues pushing her.
Me: "Drew, look at me." [Drew turns his head and looks at me] "Will you please stop pushing your sister?"
Drew: "No."
Me: "Drew, you need to go to timeout."
Drew: While walking toward the timeout chair, "Okay."

And a conversation with his sister:

Drew: [Calling sister's name while running after her]
Drew's Sister: "Drew, do you want the vacuum?"
Drew: Shaking his head, "Esss."
Drew's Sister: [Hands him the vacuum] "There you go, Drew."
Drew: "Thank you."
Drew's Sister: "You're welcome."

The expression of "normal" is often over used and mis-understood. And seriously, what is normal? But I can't help feeling that whatever "normal" is, we're there. Sure, I have to talk to Drew all. the. time. And do "therapy." But I love to talk, so I would talk to him all the time even if he wasn't deaf. It feels natural, not forced and has become part of who I am and who we are as a family.

We're having a lot of fun. Drew is becoming a toddler, exploring the world around him and becoming more and more independent. Drew can have conversations with his sister, his Daddy, his aunts and uncles. Can it get any better? Knowing Drew, I'm sure it will!

Preakness Jockey Kent Desormeaux Races Against Time For Deaf Son With Cochlear Implants and Usher Syndrome

Two weeks ago we discovered that Kentucky Derby winning jockey Kent Desormeaux has a deaf son with cochlear implants, named Jake. Everyone in my family was so excited to see Jake on the television since you rarely see anyone with cochlear implants anywhere, and I searched the internet to find footage of the pre-race story about him (it is linked in my post immediately above). It was a shock to find out that Jake has Usher Syndrome (sometimes called "Usher's Syndrome"), a genetic condition which is causing Jake to lose his sight at an increasing pace.

This USA Today article describes how Jake has had 17 major surgeries during his life, including 11 on his ears, which is an incredible number. The family is trying to have Jake experience as much as possible visually, while he can still see - which must be heartbreaking each and every day. His prescription eyeglasses are outdated almost every couple of months.

Tomorrow, Jake's dad will race Big Brown in the 133rd Preakness Stakes, looking to complete the second piece of a possible Triple Crown. I wish Mr. Desormeaux the best of luck, so we can let young Jake see (and hear) his dad win another huge horse race.

Kentucky Derby Winner Big Brown and Cochlear Implants

They call the Kentucky Derby the "most exciting two minutes in sports". While it turned out to be an exciting race, with winner Big Brown dominating the field, the excitement peaked when I noticed winning jockey Kent Desormeaux's son Jake after his father had just crossed the finish line.Jake is deaf, and wears bilateral cochlear implants.

At first I was unsure of what I had just seen. I thought I saw a child with cochlear implants on my TV screen, but because you don't see that too often (or ever), it took me a second look to be sure. It was so great to see another child like Drew out there in the world!

The announcer for the broadcast said something like "and there is son Jake, with those implants that allow him to hear the roar of the crowd". I thought it was a touching comment, and I think that will help the public become more aware of what cochlear implants are.

This article, from April of 2001, describes Jake's diagnosis and initial CI surgery. Another, earlier article describes his family's first thoughts and concerns about Jake's future.

As much as anything about the Kentucky Derby, Kent Desormeaux says, he enjoys the sounds. The weighty rattle of the starting gate as the doors slam shut behind the last horse to line up. The gathering roar of the crowd in the moment before the race begins.

The frenzied roar of the crowd as he rides a winner down the long Churchill Downs stretch, something he has done twice now, sounds pretty sweet, too.

Desormeaux and his wife, Sonia, got some bad news a couple of weeks ago. Their younger son, 14-month-old Jake, may never experience the delight of those sounds or any others.

Tests confirmed that Jake was born deaf. It's an affliction to which the jockey can relate, having lost the hearing in his right ear in a December 1992 racing accident at Hollywood Park.

``It's depressing to think your child is going to grow up without being able to hear music,'' Desormeaux said. Like ``My Old Kentucky Home''?

His family's tragedy put Desormeaux, 30, in a different mood as he approached Saturday's Derby, in which he rode the favored Fusaichi Pegasus to a convincing victory.

Thankfully, Jake's surgeries went well, and he was able to hear "My Old Kentucky Home" and the roar of the crowd as his father crossed the finish line on 2008 Kentucky Derby Champion Big Brown.

If Jake is the first person you've seen with a cochlear implant, and you came here to learn more, please leave a comment!

***Note: After searching for the NBC pre-race coverage (video here) we understand that young Jake was recently diagnosed with Usher's Syndrome(Usher Syndrome). Unfortunately, this means that Jake may experience vision impairment and possible difficulty with balance in a progressive fashion. Let us all pray that Jake be affected by this as little as possible.***

*** Here is the NBC Broadcast showing Jake at 2:48:***

Deaf NBA Player Has Cochlear Implants

Lance Allred was just signed to a 10-day contract by the NBA's Cleveland Cavaliers. While a fantastic accomplishment in itself, his stint in the NBA is even more spectacular considering he is deaf.

Lance has had around a 75% loss of hearing since birth, but now has (bilateral?) cochlear implants. In one article he described his implants as helping him hear most sounds, but when sounds are coming from behind him, sometimes he misses it. The result, he said, was that he'd been "wiped out" on several screens while playing basketball. Anyone who's played knows what that's like!

I'm not clear on whether Lance has one implant or two. I'll try to keep an eye out for him during the next few Cavs games, but if anyone knows for certain, please let me know.

Congratulations to Lance!

Bilateral Cochlear Implants: Updates and Controversies Conference

Meet Drew's friend Jonah.

Jonah is quite famous in the cochlear implant world in Columbus, Ohio. He's been featured on the local news and in ad campaigns for Nationwide Children's Hospital. That's partly because he has been so successful being implanted with simultaneous, bilateral cochlear implants at a young age, but it's also got to be because he's so cute too (don't you agree?).

Drew and his sister got to go to Jonah's home for his birthday party, and we all had a great time. Drew got him a book featuring dinosaurs that he can practice speaking with. We hope he likes it!

This postcard was sent promoting the "Bilateral Cochlear Implants: Updates and Controversies Conference" which will be held May 22, 2008 in Columbus. The featured speaker is Blake Papsin, MD, who is the program director of the Cochlear Implant Program in Toronto, Canada. Sounds interesting.