In August, 2008... our family moved from California for my husband to pursue his doctoral degree in music education at the University of Illinois. Right before leaving our home state, our youngest son, Cole had his one-year check up with our pediatrician. The doctor asked me if I noticed Cole turning to his name when we called for him, and I said, "Not really..but he just seems so interested in what he's playing with! He really is such a laid back baby. After a few more questions, he recommended we have his hearing tested. The hospital Cole was born in did not routinely perform newborn hearing screenings, as it was small and hearing screenings weren't mandated in California until months after Cole was born. Unable to get an appointment before we left, we put it at the top of our "To Do" list upon arriving in Urbana, IL weeks later. In the time we had to wait before we left, we grew more suspicious that maybe he did have some degree of hearing loss as we performed our own tests at home whenever we got the chance. We'd call out his name when he wasn't looking, and once, my husband banged pots and pans over his head while he lay sleeping in his crib, without so much as a peep from our Cole. We were now more eager than ever to have his hearing tested as soon as we got to Illinois.
We touched down in our new state early August of 2008, and on September 5th Cole had his first hearing test with the ECHO team (Expanding Children's Hearing Opportunities) at Carle Foundation Hospital. That test indicated that our boy had a significant level of hearing loss in both ears. After several more tests, including a sedated Auditory Brain Response test, it was determined that our son was profoundly deaf in both ears. Upon hearing this news for the first time, it hit me...He had never heard the phone ring or birds chirp outside his window in the morning...He had never heard the music I so faithfully played each night as I lay him in his crib, thinking it would help lull him to sleep...He had never heard the sound of his brother laughing and or the truck noises made while the two of them would play...He had never heard the sound of my voice. As a mother, I cannot begin to tell you how difficult it is to be told that your 13 month old child can't hear, and you didn't even know it. I went through a season feeling that I must have done something wrong...somewhere at sometime in my pregnancy with him I must have been careless in someway that caused his hearing loss. I researched every possible way I could've faltered to no avail. In fact, in all my research, I even discovered that as babies are being formed in their mother's womb, their ears are formed at around 6 weeks of pregnancy, right around the time most mothers discover they are pregnant. It became very clear to me that God had a very specific plan for my boy and there was nothing I did or didn't do that made him deaf...he was made that way for a purpose, and it was now up to us to help direct him from this point on in his journey.
After the ABR test confirmed Cole's deafness, we were sent home with books and videos to watch that outlined the five different ways people who are deaf, communicate. After reading, watching and researching all the communication options, we thought about what Cole's future would look like if we picked one over the other. Finally, watching the movie, "Dreams Spoken Here" I was brought to tears and my heart was melted as I watched children who were deaf, SPEAK! Some wore hearing aids, others wore cochlear implants, some were young while others were in college already and they were TALKING about life...playing sports, reading books, going to school with their neighbors, playing violin in the orchestra at Stanford...just LIFE! it was then we decided beyond a shadow of a doubt, that we wanted our son to have the same chance as any other child to do ANYTHING he wanted to do as he grew up! We didn't want his hearing loss to keep him from joining any conversation with his peers, playing a team sport or playing a musical instrument if he wanted to someday. It was then we decided to do whatever it took to open the doors of possibility to him.
After a 30 day hearing aid trial where he wore the most powerful hearing aids available and was again tested to see if they could help him hear speech, it was determined that he needed more than they could give him. We took him to Marching Band practice at the University of Illinois where my husband was a graduate assistant with the Marching Illini. I looked for any reaction he may have to the drums as we stood much closer than was comfortable for me! They didn't seem to bother him at all :) It was at the end of this month we realized that our boy needed more than hearing aids and we began talking with our team at ECHO about cochlear implants. This technology was one I had never even heard about until I learned my son needed them. What a MIRACLE to find devices that allow the profoundly deaf to hear!!!
On December 11th, 2008, Cole had simultaneous bilateral cochlear implant surgery. This means that in one 3 hour surgery, he had both ears implanted. Just three months after discovering that our son was deaf, the ECHO team had given our son the gift of hearing through the technology of cochlear implants! Although Cole would not hear what the typical person hears, this technology could open the door for him to acquire speech and be understood by those in the hearing world.
Watch Cole's activation video HERE
Since his surgery and activation in January, 2009, Cole attended Carle Auditory Oral School (CAOS) located above ECHO in the same building. While in the care of this dedicated team of Deaf Educators and Speech and Language Pathologists, Cole has flourished in the 2.5 years he was there. The small class sizes ratios of 5:1, daily individual therapy and typically hearing peers who attend with him have all helped him make amazing gains in closing the gap between his actual age and his hearing age. It is such a blessing to see him interact so naturally with peers on the playground, at the library and at church without anything holding him back.
Cole sings his ABC's HERE
There are no words to express how grateful we are to the ECHO team at Carle Foundation Hospital for walking us through the most difficult three months of our life. Never once did we question if we were in the right place or in the right hands with this team of audiologists, doctors and speech and language pathologists. God chose them for us and His plan couldn't have been more perfect. Having just moved away from all of our family and friends upon learning of Cole's deafness, we quickly felt at home at ECHO as this group of professionals lead us every step of the way to a life of HEARING and SPEAKING for our boy who was deaf and now can HEAR!!! The team at CAOS has lead our family through the past 28 months of intensive training, helping us understand what it takes to help him using his new "ears." We couldn't be more blessed, and as we move back to California this summer, we will always consider it an honor to have begun Cole's lifelong hearing journey with our ECHO/CAOS "family" at Carle Foundation Hospital! We left with a boy who was in silence, and are returning with one who can sit in his Daddy's concerts and hear the sound of music...it doesn't get much better than that!
Now Cole is at a mainstream pre-school 3 days a week and has weekly therapy with a a certified AVT/SLP. We are so thankful God has brought him this far!!!