The Scoop

Most of you who read this blog know Max's story. You walked with our family through our adoption journey and encouraged us as we welcomed him into our family. In August we will have had him four years. It is hard to believe that he has been with us that long! Four years ago he got a Dad, a Mom, a little sister, grandparents, aunts, uncles, cousins, and friends. Four years ago he also got language. We have seen him go from an extremely frustrated 5 year old boy living in a quiet world with no way to communicate to a lively, communicative 9 year old, whose hands are always busy "speaking" American Sign Language.

When we adopted Max we were bombarded by...well, by everything. During the adoption process we did the best we could to prepare for what was ahead of us. We knew that we needed to make decisions about his education and language. Where would he go to school? Would our family use ASL or Signed Exact English? And what about cochlear Implants? If you have never heard of a cochlear implant, click here to read a little bit about them. For us, having never been around a deaf person, cochlear implants seemed like a no-brainer. I mean, why wouldn't we take him to the doctor and have a device implanted into his brain that could make him hear. Then he would be like us.

Then the research started. We were swept into a sea of varying opinions. Implants are very, very controversial. The doctors, of course, recommended that we have the surgery as soon as possible. But the people who we met through Max's school, other Deaf people, strongly advised against it. They talked about the impact this would have on Max as a person. They told us that he would be stuck in between worlds. He would no longer be a part of the Deaf Community. Cochlear implants are rejected strongly by the Deaf Community. He would not be accepted by them...but neither would he be a hearing person. He would lie somewhere in between the two worlds.

We considered both sides. We built a pro/con list. We prayed and deliberated and talked it to death. We finally decided against it. Our main reason for deciding against implants was the therapy involved. Max would have had to spend hours in therapy each week. The doctors told us that we would have to completely QUIT signing with Max to "teach" him to rely fully on his "ears". At that point we had only had Max about 6 months, which means Max had only had language for 6 months. We felt like he would have really resented us if we had taken his language away and put him back in his quiet world. So we laid the issue to rest.

Fast forward 3 years. Max has decided that he wants to revisit the issue. He wants implants. He decided while Chad was in Atlanta and the kids and I were staying at Sunfish (my parents' house). He told us that he wants to hear. He wants to hear the fish flop in the water and he wants to hear the four-wheeler when he rides. So...we are starting all over again. We have been researching and reading and talking to people about it all. Wow. We don't really know how to feel about it all. At this point we are trying to be as honest as we can with Max and with ourselves. This will not be a quick fix. It will not "cure" his deafness, and we don't want his deafness cured. It is part of what makes Max who he is. We don't want him to think that he will instantly hear just like we do. We want him to understand that this is a LONG process and it could end with him hearing as much as he does now. But we also want him to know that we care about him and what he desires. We want him to know that we support him and will help him in anyway we can.

So, here's the scoop. We had our first doctor visit about a month ago. We went to the Hough Ear Institute here in Oklahoma City. Max had several hours of hearing testing and then got to look at an actual implant and pick out what colors he wanted on his processor. He was very disappointed that he didn't get to take them home that day. Next, we went to see our Otolaryngologist, Dr. Kopke. He was wonderful. He was very, very thorough and examined Max well. He was interested in Max's history and possible causes for his deafness. We visited about Max's deafness quite a bit, but we also visited about some other things. Max has terrible eyesight. He also has balance problems, which we always assumed were a result of the deafness. Dr. Kopke also pointed out that Max has tongue weakness. When he sticks out his tongue it goes to the right. All of these things (deafness, bad eyesight, balance problems and tongue weakness) can sometimes indicate some type of neurological disorder. The doctor ordered a CAT-Scan and MRI, which we had done last week. These tests will tell us several things. One, they will tell the doctor if everything in Max's inner ear is formed correctly. Everything must be formed correctly for the implant to fit in his ear. Two, it will tell the doctor if there is anything more significant going on neurologically. We are very eager to know what the doctor finds in both of those areas.

Our appointment is in the morning at 8:30. By the time most of you read this post we will probably be done. Will you please pray for our family as we go through this process. It could be that we go see Dr. Kopke in the morning and he tells us that it is physically impossible for Max to get the implants. In that case, Max would be terribly disappointed. It could be that we go tomorrow and schedule the surgery. If Max does end up getting the implants there will be lots of adjustments for all of us. It will be a long, hard journey. Of course, we will write about the journey here and keep you posted on what is going on. If you have questions about any of this or have any wisdom to share, please comment or send me an email.

(And I must say this: There's always a chance that some sort of Google search led you to this post and you don't know Max or our family. If you have something rude or discouraging to say about our decision to pursue cochlear implants, please keep it to yourself. We are done with trying to be politically correct or culturally accepted. We are, above all, Max's parents. You may not agree with our decision, but please respect us and our right to decide.)