IEP Meeting

As we transition to Kindergarten, it is time once again for a multi-factored evaluation and writing of a school-age IEP. I'll share the details of that with you soon, as everything should be finalized by the week end.

As I prepared for the meeting with our school district this week, I came across all of Drew's diagnostic testing from five and a half years ago. There is something about reading, "Findings suggest that Andrew has profound hearing loss in both ears," and "no response," that, even to this day, makes me incredibly sad.

My emotions are so mixed. I am so incredibly happy with how well Drew has done with his cochlear implants, and I'm so incredibly thankful for this technology. But I'm still struck at times by the sadness of having a child with a disability, of being told there is something wrong with my child. In some ways, I hate the fact that I even know how to read an auidogram, or that I understand the workings of the cochlea. On the other hand, I am so thankful that I've gone through this journey, as I've met so many wonderful people and I have such a wonderful appreciation for the miracle of hearing. But I hate this for Drew. I hate the unknown challenges he will encounter. If I could take it all back, I would.

Five Years

Five years ago yesterday we learned of Drew's hearing loss. Yesterday, we didn't even remember. Not a clue that it was the anniversary of his hearing loss. Drew went to the pumpkin patch with his class, told me all about the straw maze he played in and how his teacher gave him a spider ring. It was a pretty cool day.

That's what happens when life is so normal. When early detection and intervention work perfectly.

Click here to read about Drew's diagnosis.

"Swish"

Recently the Pediatric Cochlear Implant Circle asked me to write an entry for their "CI Circle News" focused on my feelings as a father upon learning that Drew was deaf.

I put it off for a few weeks, wondering what to say. In some ways that day seems far in the past, and in another way I still feel tender bruises. Of course it's difficult to get this personal about my feelings as well.

However, to be true to the purpose of this blog, which is to help other families who follow in our footsteps find support and empathy, to become empowered, I finally sat down to write on Sunday. This is the ink that was drawn from my pen.

Swish.

I couldn’t see. Heavy drops of rain pelted my windshield, lingered, and eventually were pushed aside by the wipers in the fashion of a blinking eye. Swish. I saw nothing ahead but a long road of silence. Of fear. Of Dread. Swish.

Swish. I couldn’t breathe. That long, deep exhale of relaxed contentment, of a world full of bright futures and sunny skies that exists in the world of children were crushed by the dark news of which I had just heard. My chest is heavy. Swish.

“Hello? How did it go?”

“He can’t hear.”

I couldn’t hear. I didn’t want to hear. It can’t be. Didn’t he hear me drop the metal dog bowl just the other day? Remember when he startled to the dog barking? Say that again?

I can hear the raindrops pitter-patter upon the hood of my car, the growl of the engine, the fast-paced beating of my heart – but my son can’t hear? He’ll never get to dance to music like his sister holds so dear? He’s deaf? Swish.

I was numb. I was alone. My wife was alone, learning of this news with no one to hold, finding that all the “I love you” whispers and lullaby tunes had truly gone unheard. He’ll really never know my voice? Here I was, separated from her by a few miles of road, buckets of falling rain, and seemingly everlasting minutes of helplessness. Swish… Swish… Swish…

Have you ever hugged someone and clung to each other for dear life, feeling as though if you let your grip loosen, if you even just moved an inch, that you’d fall off the face of the earth?

Have you cried on another’s shoulder not for your own pain, but for the struggles you foresee ahead for your boy – girl – loved one?

Have you ever felt utterly helpless when looking upon a child’s eyes…and then being unable mask your fear and talk to that child, to tell them “everything will be ok”?

Ever learned what you want in life more than anything else, only at the very moment that you learn it’s the one thing you cannot have?

Swish. What did I do? What can I do?

Nothing.

Swish.

It Came and Went

Yesterday was October 26. Exactly two years after Drew's Hearing Loss diagnosis. Last year the anniversary struck me rather hard, but this year I barely remembered. I guess that is what happens when life is just plain good.

There are still times, even after two years, that I get sad. Mainly only when I think about the fact that it is not fair that Drew's life will be harder in the future as a result of his hearing loss. I worry about him being teased, or that school or the dreaded teenage years will be harder for him than a hearing child. But overall, I am ecstatic with where we find ourselves two years post diagnosis. Who knew that my deaf little boy would be learning to talk and communicate so well?

Some of my favorite, and not so favorite, things Drew has said recently:

• "I'll get it," when referring to his ball that rolled under the TV stand.
• "I don't want it," when referring to his dinner. If dinner is a bunch of carbs, no problem. Any veggies? "I don't want it!"
• "No! Brown shoes!" Letting Mommy know that he doesn't want to wear his tennis shoes.
• "Kiss. All better," as he makes me kiss his legs, arms, head, any body part.
• "Love you, Mommy." It's taken a while, but it melts my heart. I nearly cry every time I hear him say it.
• "Yeah, Baby!" He sounds like Austin Powers when he says this, anytime he is happy about something.

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.

Dr. Jacques Herzog - Cochlear Implant Surgeon

Back what seems like years ago, when we were totally in the dark as to the different ways we may be able to help Drew, we were fortunate enough to meet Dr. Jacques Herzog who is a cochlear implant surgeon in St. Louis.

We called upon many of our friends and family members to help us find information resources, and it just so happened that my uncle lived in St. Louis and knew Dr. Herzog. Because we were having a nightmare of a time getting a diagnostic ABR test scheduled for Drew in Columbus, we ended up driving all the way to St. Louis and got that test completed over a month before we would have been able to do it at home.

That morning we were saddened to discover that Drew was indeed profoundly deaf in both ears, but were grateful to work with an extraordinarily kind technician who comforted us. She then directed us to Dr. Herzog's office where he met with us and answered many "stupid" questions that we had. While his answers did not speak of a magical cure for deafness, we did feel comfortable knowing a bit more about the cochlear implant option.

Here is Dr. Herzog explaining Cochlear Implants:


Should you happen to live near St. Louis and you are considering a cochlear implant, I highly recommend visiting Dr. Herzog and also perhaps The Moog Center for Deaf Education. We did not get to visit the Central Institute for the Deaf (CID) but I have talked on the phone with an attorney in a very large law firm who attended CID as a child. He is completely oral, and told me he doesn't even remember being unable to talk. I actually had to ask him "what is your hearing loss?" His answer? "I don't know."

Amazing.

Happy Halloween!

I am so excited for Halloween and so happy that it is finally here! I think it is because I have the cutest little witch and pirate to take trick-or-treating tomorrow night. I have decorated the house this year like never before. We have pumpkins, ghosts and spiders adorning all of the tables and mantles in our house. We have carved pumpkins, baked pumpkin seeds and we even have put up ghost lights on our porch. Drew and his sister make make every day more enjoyable, but especially holidays.

I have been looking forward to Halloween for some time. Really since last year. You see, Halloween Day last year was the low point in our journey to "turn on" Drew's ears. You might think that D Day would be the low point, but really the days immediately following the diagnosis were worse. They were filled with so many unanswered questions. The uncertainly surrounding Drew's future made for some very long and difficult days. October 26th was awful, but the not knowing was even worse. How profound was Drew's hearing loss? What could be done? Would he go to school with his hearing peers? The list of questions went on and on and the uncertainty was unbearable.

Why was Halloween day, in particular, so hard? First, I found out that the audiologist that did Drew's test knew he had a profound hearing loss and did not tell me. After researching hearing loss, intervention and amplification over the weekend following Drew's test, I decided to call the audiologist. I had several questions for her on the testing she had run, results and amplification. I asked her, "Do you think Drew will benefit from hearing aids?" Her answer, "No, he will need a cochlear implant." How did she know he would need a cochlear implant if she didn't know the level of his loss? I requested the paperwork from his tests (she had not provided them to me on the 26th) and on the top of the paper she had written, "V Wave absent at 90db bilaterally". She knew he was deaf and did not tell me.

After finding out that a cochlear implant was likely in Drew's future, I decided to contact the insurance company to get information about our insurance plan. The representative from our insurance company told me that we had no (that's right, zero) coverage for hearing related issues. This included all diagnostic testing, hearing aids, cochlear implants and therapy for hearing related issues. When we learned of Drew's hearing loss I did not think that things could get any worse. But here I was learning that my insurance company would not cover the intervention that Drew needed. How would we pay for all of this ourselves? Luckily follow up calling in the days that followed revealed that we did in fact have coverage, so this fear was quickly dismissed.

It was cold and misting rain on Halloween day last year, which only added to my depression. I barely brought myself to cook dinner and once that was done I couldn't bring myself to do anything else. That included taking the kids trick-or-treating. Halloween was the one time throughout everything that I did not do what I should have for my children. I know that they will not remember the fact that they did no go trick-or-treating when they were so young, but I will remember.

I think that I have done a really good job handling all of the ups and downs surrounding Drew's hearing loss. From day one I jumped into finding out as much as I possibly could about hearing loss and intervention. I accepted the diagnosis and realized that Drew is going to have a great life. But there are days that were difficult and the anniversary of those days bring on a flood of new emotions. I am so happy with where we are at in this journey, but I remember what it was like at this time last year. It's a weird feeling to be so happy with where you are but remember how badly you felt just a year ago. At that time I could not have imagined how far we would come in just one year. I am confident that with time these memories will fall farther into the abyss of 'things not worth remembering' and the new ones of Drew hearing will be in the forefront of our minds.

D Day

Well, it is upon me. The anniversary of the day - October 26, 2006 - that forever changed my life. Through this year I have been strong and held my composure. I had to in order to make sure I did everything that I needed to do for Drew. So many times I was told how well I was handling things, although there were many times I wanted, needed (and did on occasion) breakdown. For some reason this anniversary is hitting me harder than I had expected and I'm fighting through tears as I type.

It was a rainy fall day, with a fierce wind that put a chill in the air. Beautiful golden leaves were falling off the trees and blowing all around, covering our lawn and street. It was the kind of fall day that reminds you summer is over and another winter is headed your way. Drew's Sister spent the day at preschool and with Grandma because of Drew's doctor appointment. The appointment with the ENT was scheduled for 2:00 pm.

I decided that it was a great day to go shopping! I can remember how happy I felt walking through the mall with Drew that day. I was in no way worried about the appointment later in the day. Drew's Dad and I were confidant that there was still fluid in Drew's ears. I enjoyed picking out a birthday present for my Sister and eating a nice lunch at Panera Bread.

After leaving the mall, I still had time before Drew's appointment, so I decided to stop at the grocery store to pick something up for dinner. Drew's Dad and I love crock pot spaghetti, and with the chill in the air, it felt like a great day to have our first "fall" meal. Drew fell asleep in the car on the way home from the grocery store. When I got home, I tip toed around the kitchen making dinner while he slept in his car seat sitting on the kitchen floor. I knew that if he were to wake he would want to eat, and I did not have time to make dinner, feed him and get to the doctor on time. So I was quiet. I lifted the stock pot out of the cabinet so quietly. I gently laid the spaghetti in the pot and I went to the bathroom to get water. There were points that I would make a little too much noise and I would hold my breath and turn to see if it woke Drew up. He never startled.

The ENT's office was cold and sparse, just as before. Something was different this time, however. My behavior. I was not nervous nor was I shaking. I notified the receptionist that we had arrived and then took a seat in the corner of the waiting room. I gently flipped through a magazine while I waited for Drew's name to be called. I only sat for a few moments before they called us back.

I sat in the same office as before. This time I went ahead and removed Drew from his car seat and held him in my arms. He was still sleeping. He was so warm and cozy in my arms, and I kissed his forehead. As the doctor walked in, wearing the same funny thing on his head, I told him, "I'm ready for you!" He was just as I had remembered, middle aged and unfriendly. He looked in Drew's left ear first and proclaimed, "The fluid is clear." My eyes got big and my heart sunk. I tried to maintain my composure when inside butterflies were jumping in my stomach. He had checked the right ear in the meantime. Same answer, "The fluid is clear in that ear, too."

I sat for a moment and then the doctor asked, "So, do you think he can hear?"

"I don't know," I responded, in a soft voice. "I was certain that there was still fluid in his ear because I haven't seen any changes in his behavior." It was at that time that the doctor picked up a metal pan and dropped it to the floor. The clanging and banging of the pan hitting the floor was so loud that people in the waiting room probably startled. Drew laid peacefully asleep in my arms. The doctor shrugged his shoulders and said, "I'll be back in a minute."

He returned with an audiologist. She was young and friendly. She escorted me to a new room where she ran an OAE test on Drew. His results were "refer" at all five frequencies in both ears. My heart sank further, as if that was possible, and the butterflies danced harder in my stomach. "Let's do a different test," she said. "The OAE is just a screening test and can produce false results." She moved Drew and I to another room.

From there much of the rest of the testing is a blur. I sat in a rocking chair, holding my baby while all sorts of wires were placed on his head. The audiologist switched the equipment from the left ear to the right and then back again and again. She would leave the room and return with another audiologist. Then she would leave and return with a doctor. I watched the hand on the clock on the wall tick, tick, ticking. One hour went by. Then another. I sat in the rocking chair, holding Drew and I cried. I would ask, "How are things going?" And I would get the same answer each time, "Let's wait until I'm finished." I continued to rock him and closed my eyes. The tears streamed down my cheeks.

Finally the audiologist removed all of the wires from Drew's head and ears. She gathered my belongings and took Drew and I back to the office we started in. She told me that she was going to review the results with the doctor and he would be in shortly. She left the room, leaving the door partly ajar. I sat in the office just looking at Drew. He was so perfect; how could anything be wrong with him? About that time the nurse that called Drew's name in the waiting room walked by. I think she was shocked to see me still in the office, nearly three hours later. She tapped on the door, pushing it slightly open. "Everything, O.K.?" she questioned.

I couldn't hold them back. The tears came streaming down my face and I began to sob. I have never felt so scared, helpless and alone in my life. I had no idea what the results of these tests would mean for Drew or for my family. I had no idea what could be done for a child with hearing loss. The gravity of the day was sinking in and it was too much for me to handle. I cried and cried.

Finally the doctor came in the room. He seemed even more unfriendly, if that was possible, this time. "Well," he paused, "that's not what we wanted."

Excuse me? That's not what we wanted? That's all you have to say to me? Your audiologist has been testing my son's hearing for almost three hours and all you can say is, "That's not what we wanted?" What is not what we wanted? Tell me what is wrong with my son!

The ENT continued, "Well, you'll need to have more testing done." He would pause for what seemed like an eternity between each sentence to make the most awful hissing sound. "Your son has hearing loss." Insert awful hissing sound, "Do you have any questions?"

The situation was too intense and I felt the walls of his office closing in on me. I was alone, scared and too upset to ask any intelligent questions. I continued to cry, which I could tell was making him very uncomfortable. Finally I mustered up, "What can be done?" He looked at me for a moment and said, "Well, we don't know until further testing is completed." At that point I was done with him and he left the room. I started gathering my things while trying to get a handle on my emotions. I heard a faint tapping at the door. It was the audiologist, checking to see if I had any questions for her. Again, I was at a loss. I can only remember that she told me that many children with hearing loss develop speech equivalent to their hearing peers with things like hearing aids and cochlear implants.

And that is how I left. Clinging to the hope that Drew would be one of the "many".

Drew Could Not Hear

One year ago today I knew that Drew could not hear. He was not responding to most environmental sounds around the house, like the dog barking, door bell ringing or his sisters loud squeals of delight. Occasionally I would see him startle, throwing his arms while sleeping, in perfect time with an environmental sound. But I knew he was not able to hear. I convinced myself that the reason was only because of the fluid the ENT had found weeks earlier. Why would I suspect anything else?

Drew's Dad and I were both feeling pretty good one year ago. We had a reason for Drew failing his newborn hearing screening. It was our glimmer of hope and we truly felt that everything was going to be just fine. We were holding on tightly with both hands firmly grasped on the thought that the fluid would clear and Drew would pass his hearing test. I can even remember Drew's Dad saying one night, as we went to bed, "I hope that my lack of worry isn't setting it up for them (the ENT and audiologist) to tell us he can't hear."

Drew's Dad and I knew that the fluid was still there. We did not feel as though the fluid was clearing because we had not seen any change in Drew's behavior indicating that he could hear. So we decided that I would take Drew to the follow-up ENT appointment on October 26th. Alone.

All the ENT was going to say was, "Come back in one month and we'll see if the fluid has cleared," right?

The Days Leading to Diagnosis

Drew failed his newborn hearing screening on September 26, 2006, just two days after he was born. Many of Drew's first days and nights are such a blur, with the sleep deprivation and all. But I knew in my heart very early on that something was not right. Why would he not pass his screening? How could he possibly not hear? We have no history of hearing loss in our families. This can not be happening.

I can remember that Drew's Dad was not overly concerned about the failed results. The audiologist had given him some encouraging words like, "many babies who do not pass their screening have normal hearing." I did not find comfort in those words. I was worried from the moment Drew's Dad told me he did not pass. I had been showering when the audiologist came in to explain Drew's test results so I never had the opportunity to ask any questions. All we were given was a list of places that do diagnostic ABR's for infants and told to schedule a follow up test.

In my heart I knew he couldn't hear. Why hadn't Drew calmed to the voice of his Daddy right after birth? He was crying at the top of his lungs with his Daddy talking to him and he continued to cry. When my daughter was born, Daddy's voice instantly stopped the crying and she turned to look in his eyes for the first time. Why hadn't the squeaky door in my hospital room woken him as nurses and family members came and went? He never startled. Never woke to a loud sound. I knew something was wrong.

We took Drew home on the same beautiful September day as his hearing screening. I can remember my Mom bringing Drew's Sister home (she had stayed with Gamma and Pa Pa while we were in the hospital). I told my Mom that Drew had not passed his hearing screening and she was just as confused and worried as I was. I pulled out the audiologist report from the hospital. It was so confusing to me and I had no idea how to read it. I began calling the list of places we were provided to do the follow up testing. Many of the places on the list did not do diagnostic ABR's on infants, and those that did were booked until December. I called places for over an hour. When they would tell me they could not get Drew in until December I would cry. I would try to mask my sadness and fears while finishing the conversation, "Well, thank you for checking, but I'm not going to wait until December. I'll try somewhere else." Finally, the receptionist at Columbus Speech and Hearing took pity on me when she could hear me crying through the phone and scheduled him for early November.

Drew had jaundice as a newborn, so we spent many days at the pediatricians office getting his belirubin tested. At his first appointment, two days after we left the hospital, I asked his doctor about the failed hearing screening. His responses left me with little hope: "Well, I've never had a baby fail his newborn screening." Never, seriously? You've been in practice for over 30 years and have never had an infant fail the test? Then he continues, "I don't know exactly how to read these tests, but even if he is deaf, there are these things called cochlear implants so he won't get hit by a car if he is playing in the street." I was standing at the time he was telling me this, but I had to sit. The gravity of the situation was too overwhelming and I sobbed. The kind of sobbing that is uncontrollable. There I sat in his office, completely inconsolable. It was awful. He nor Drew's Dad knew what to do. Once I pulled it together I was able to say, "Well, can you at least call around and try to get a follow up test sooner than the first week of November?" He obliged, and called later that day to tell me Drew would be seen by an ENT on October 4th.

I cried a lot after that. As I would nurse both of my babies I would sing and talk to them. Despite all of the visitors and chaos of having a new baby, there were always those moments of breastfeeding that were just me and my little baby. I loved those times with both of my babies. But there was always a fear when feeding Drew: What if he could not hear me singing? What if he couldn't hear me telling him how much I loved him? I would cry. Every time I would feed him I would cry. It actually became a bit comical to my Mom and Sister who spent many of the first days of Drew's life helping me at home. They would bring the Kleenex as I would start to feed Drew, knowing the tears would follow.

I can remember one night in particular, about four days after Drew came home from the hospital. Drew was asleep in his pack in play in the corner of our living room, my Mom was cooking dinner and Drew's Dad had just gotten home from work. Drew's sister was running around the living room playing with her toys, in particular her popper. She was going every where with that thing and making a ton of noise. I kept telling her not to pop it by Drew, but she did anyway. He never startled, never woke. I sat on the couch watching her play and cried.

I actually get teary eyed just thinking about the things I went through this time last year. It was such an emotionally draining and physically exhausting time. I feel cheated because I never got time to have any worry free moments with Drew. I spent a lot of my time on the phone scheduling appointments or on the Internet researching hearing screening and interventions for children with hearing loss instead of resting and spending time with my new little boy. I'm sure that many parents who have been through this journey like me have many of the same feelings.

I could not sleep at all on October 3rd. I was worried about what the coming day would bring and if I would be strong enough to hear what the ENT had to say. Drew's appointment was not until late in the day so I had to sit around all day waiting for it to come. My Mom drove Drew and I to the appointment. She was insistent on doing so, mainly because she and my Dad wanted to make sure that I wasn't alone if Drew was diagnosed with hearing loss.

The ENT's office was cold and sparse. I was uncomfortable from the moment we walked through the doors. My stomach was uneasy and I was having a hard time keeping myself from nervously shaking. The ENT walked in the room. He was middle aged, unfriendly and had something funny on his head. He asked a few questions and then looked in Drew's ears. It took all of a couple of seconds to find fluid in both of Drew's ears. I looked at him sternly and said, "Do you think that is why he failed his hearing screening?" The ENT said, "Yes. I will see him back in three weeks. Hopefully the fluid will have cleared and we will retest him then."

Drew can hear, I kept telling myself. I was in a way relived, but still uneasy. I kept telling myself that everything would be O.K. but deep down I still thought that something was wrong. I scheduled a follow up appointment for October 26th.