Support, Choosing to go for it.

Wow, I just realized that anyone reading this will have to wait through the history before we get to the CI part. Don't worry, the history is important, too. Helps show how and why we made certain choices. And that everyone comes from a very different place in life, takes a unique path.
Well, there we were. The only folks on post with a deaf child. Boy, did we stick out. There were maybe 3000+ folks who worked there, a good 2/3 of them were civilians. Very interesting place. I would have never guessed how many deaf adults were working there at just that moment in time! :)

As soon as people found out our son was deaf, we heard that two of the three post photographers were deaf, too! Then we met a couple at church who was deaf. Well, they both had a hearing loss. I think the man is deaf, and the lady was hard of hearing with hearing aids. She's actually considering a cochlear implant now, too! We met them at our church just off post, I think, at a signing service. I can't remember exactly how we met them first, but that's what sticks in my mind. They became very important, good friends of ours, and remain so to this day. Through the lady I learned of maybe 8 folks working on post who were deaf! Some of their co-workers had learned sign language, some used TTY, a few of the workers were excellent lip readers and speakers. We got to know that first couple the best, they were very supportive of us and and the journey with our son. We learned a lot from them.

Okay, now I have to admit to you, before I knew my son was deaf, I never noticed people signing on post. Once I opened my eyes to it, I saw signing everywhere! I was such an ignoramus I wondered what kind of future my son could have, how hard life would be for him. Would he ever be able to drive a car? Who would he marry? How will I teach him the basics like colors and the alphabet? I seriously wondered about these things, I didn't have a clue. Imagine my shock when I was at the School for the Deaf and one of the deaf instructors drove up in a car. I even remember what the car looked like, how shocked I was at my own ignorance!

Well, the deaf friends we met were very open and welcoming to questions. We even participated a little in the signing service, as we learned more. One of my strongest memories at that post was going to their home for New Year's Eve with another deaf couple. We had learned some sign language at that point, and were pretty good at picking up languages, but our brains hurt trying to keep up! I swear, and I'm betting my friend will read this thought here for the first time (I've never told her this), that as they drank more beverages, they began slurring in sign language! I never, in any of my ASL and SEE classes, ever learned about this! But it was a very fun time for us, a great group of people who made me see my son as a normal kid. That being deaf was okay, just a part of his life. Something we could learn about and help him.

We also had a ton of support from the School for the Deaf (SFD) back there. Some of the parents were also deaf, some hearing. The children were deaf for different reasons, too. But the school was amazing. I have found in my CI experience that many CI parents will immediately turn their noses up at the mention of a SFD. That makes me so sad, to know what they are missing out on. Don't get me wrong, these schools vary as much as any public school system does, but I found Matt's first SFD to be exactly what we needed at just the right moment. They did teach ASL, but were also very vocal with students who could benefit from that. The speech therapist was AV trained, very experienced, and Matt loved and excelled with her help. The first teacher with Matt had been around for over 20 years at that school, I think, and she had seen it through many changes. I think it used to be only oral! Then a swing to strongly ASL, and when we were there it was going through changes again. Thank goodness. I found this school much more open to changes than the public school district.

The public school system was a nightmare. Our Early Intervention was wonderful, but once Matt reached three, he was going to be lumped into a program that all of the deaf/hoh kids went through. Very little room for Individual in the IEP. The program manager seemed to have very little if no interest in the children's actual needs, or concerns of the parents. She actually fought with the parents, quite loudly for almost two hours, during the Open House! I kid you not! She said, and I quote, "We have a program here that we think is appropriate for your children. It may not be what you think is BEST for your children, but it is appropriate. That is all we must provide by law. We do not have the money or the resources to do any more." Parents had volunteered to build a better speech room, out of their own resources, to code, etc., she wouldn't have anything to do with that. We stayed with the SFD. Our personal choice, and it did work out best for us.

Well, back to the CI. Through Matt's experience with his hearing aids, and his acquired oral and sign vocabulary, he was able to tell us he wanted to hear again, even though his HAs didn't work for him any more. He was sad that he couldn't hear helicopters any more (except in his bouts of tinnitus). He was confused that he couldn't hear his baby brother screaming (except again, in his tinnitus, try explaining that to a kid in his position). He wanted to honk the horn and actually hear it. He wanted to push the button on his castle toy to hear the ghost sound again. He kept turning up the TV volume to hear Blue's Clues, until this didn't help him any more, either. Even at his age, barely three, he was angry that he couldn't hear any more. He only had a small taste of sound, and he wanted it back.

We had that year to think about a cochlear implant, to learn what the surgery and habilitation involved. We had already been so deeply involved in Matt's life that I knew we could handle working with him and a cochlear implant. To be honest, the decision to get a cochlear implant was not an easy one. I had grown used to him wearing hearing aids. I was so sick of bringing him to doctors, I wasn't really sure I wanted to put him through an actual surgery. But it was very hard for me to watch Matt explore and enjoy his hearing with aids, and then to grow angry when he couldn't hear any more. It seemed to mean so much to him, at his young age.

There wasn't much online support at that time, but I did contact the implant companies to get some info on their implants, and I talked with everyone who had worked with Matt. The school and the hospital were very hands off, not pushing us to or away from an implant, and not directing us to any certain brand of implant while we were making our decisions. Advanced Bionics DID put me in touch with a CI mom in our area, though, who actually made the effort to drive out and meet us, introduce us to her young CI son. He was 18 months old then. We were able to introduce him to Matt, show him the implant. Matt called it the hearing aid INSIDE his ear. That's how he looked at it then. The decision was very easy after that.

Okay, I need to pay attention to the boys, need to type more later. Next posting I'll try to focus on family reactions, and how we chose which implant we wanted for Matt. This is helping me get my thoughts straight, anyway!