My Son, the Cyborg

When Big Kid was first implanted, I knew very few people who understood what it meant to have a cochlear implant. Fortunately I met some implanted adults and parents of implanted children who could help explain to me what was happening to my child. I also read Michael Chorost's book, Rebuilt. Michael Chorost used the word "cyborg" throughout his book.  At this time my son was already fascinated with robots, and even chose to be a robot for Halloween. My son is a cyborg.

An article by Michael Chorost was published a few months ago,  in which he discusses his use of the word "cyborg" in his books: Why I Walked Away from the Word "Cyborg", Psychology Today, March 19, 2013. His article intrigues me enough to want to read his second book. What stuck out to me most in the article, though, were his thoughts about the changes to his life because of his cochlear implant:

"A few weeks after I went deaf, my audiologist handed me a cochlear implant that had been opened up so that the circuitry was visible. It was shocking. This thing, this circuit board, this maze of chips and wires and resistors, was going to go inside my head. Permanently. That was scary enough, but what was even more intimidating was knowing that it would forever change the way I perceived the world. It wouldn't give me normal hearing. It wouldn't even give me back the poor and partial hearing I’d had since birth. Things would sound completely different in a way that no one could describe to me.

My body was about to change in a way that it hadn't since puberty."

My son faces enough challenges in life with being a military child, constantly moving, changing schools, making new friends. The cochlear implant sticks out on his head, and is an obvious sign to other that he is DIFFERENT.

As a mother, I'd like my son to be "normal" and not stick out from other children as different in any obvious way. With the cochlear implant this is nearly impossible. Over the years, though, I've accepted that there is no true "normal" in life. I've taught each of my sons that we are all quite different from each other, and that some people have differences that are more obvious than others.

Despite Big Kid's longer hair, his second cochlear implant will make it even more obvious that he is different, that he is a "cyborg". He is also a high school student who texts his friends, studies geometry, Arabic and AP History, and is looking forward to swimming in the pool with his new waterproof cochlear implant. There was no parenting manual to help guide me through these unique child rearing challenges. Big Kid will have his second cochlear implant activated in about a month, and we are very excited. ;)

Habilitation Post CI Surgery

Cool! The kiddo gets an implant! Let's video tape the CI activation to share with the world. They're going to hear sound for the first time, right? Well... not quite. I remember both of my boys' first CI activations. The audie started up the computer, sent some sounds out through the computer-CI hook up, and both boys looked as if they hadn't heard a thing. My heart just sunk. Then I remember with Big Kid when the audie pointed out, "Look at his face. When the sound is transmitted, his face turns bright red." WOW, did it EVER! His brain was definitely getting input, just didn't yet know what to do with that input.

Now he's going to get his second cochlear implant, in three short days. About a month or so later his second implant will be activated and hooked up to an external processor, but it will still take time for his second ear to learn how to hear the sound. After activation, I will be driving him up weekly for "ear therapy" and remapping of his CI program as needed. Woo hoo! Three hours of driving for a one our appointment each week (she types sarcastically)!

The point is that the cochlear implant is not a "cure" for deafness. While his ear will be able to access sound through the nifty cochlear implant tool, he is still deaf. To access that sound properly, his ear will have to do tons of ear-aerobics, listening exercises to help his brain understand sound. Big Kid will have his therapy through the implant center, he will wear both implants most of the time, and at other times he will wear only the implant over his newly implanted ear, all in the name of post-implantation habilitation therapy. This process takes time, commitment, consistency, bottom line...a lot of work.

One of my favorite tools I've come across when it comes to sound/word recognition is TumbleBooks. According to the TumbleBooks website: "TumbleBookLibrary is an online collection of TumbleBooks – animated, talking picture books which teach kids the joy of reading in a format they'll love. TumbleBooks are created by adding animation, sound, music and narration to existing picture books in order to produce an electronic picture book which you can read, or have read to you."  Simply put, TumbleBooks presents books read aloud, with the words highlighted as they are read. This service is available to everyone, for a fee, but fortunately free to us through many libraries in the US.

Over the years we've accessed TumbleBooks through local libraries and Army Knowledge Online (AKO), but now can access it through MyArmyOneSource.com. If you are an Army family who would like help accessing this online resource, please send me a note and I'll help you out. Here are some screen captures from TumbleBooks (click on photo for larger view):

 

 

 



Now for a slightly humorous "first sounds" story... When Big Kid was first activated, he freaked out after we started the minivan to head home. Instead of taking off his CI, we turned down the volume right away, then turned it back up gradually on the two hour ride home. Once home he ran to the toilet and laughed hysterically when he heard himself "utilize the facilities" for the first time. We were rolling on the ground laughing, until he flushed the toilet. His mouth dropped open, pure terror on his face, and he screamed and ran out of the room because the sound scared the heck out of him.

On a slightly less embarrassing note, I remember telling him "I love you" for the first time post-CI activation, and realizing that was the first time in over three years he probably heard me say those words. That was nothing to hearing him actually say the words himself some time later. After much work, his implanted ear not only learned what sound was, but now very well understands speech and even music.

Bottom line... The CI is not a cure. Post implantation involves a bunch of work and some frustration, but it's worth it. It's all worth it. Twelve years after his first cochlear implant we can't stop Big Kid from talking...and talking...and talking... I don't know what exactly will happen with his second cochlear implantation, but we are well prepared for the work that comes after surgery. ;)

Video: How a Cochlear Implant Works

My son has a spiel he goes through when telling people about how his cochlear implant works. He's been doing this since he was three, and is very good at answering questions, too. Yes, I'm still hoping he'll post soon, but he's getting ahead on some classwork before his surgery next week.

In the meantime, here's a very nice, short video describing how a cochlear implant works. It doesn't matter how long we've been living with cochlear implants, I am still in awe of how the technology can bring sound to many deaf people.



Maybe I'll just compose a list of questions for my son, to get him ready to talk about his implant. What would I ask him? Hmmm...

Rush Limbaugh

I haven't touched this blog in YEARS. Looking at the stats, though, it's still been getting anywhere from 200 - 800 hits/month. Which words searched generated the most hits on the blog? Anything with: Rush Limbaugh deaf cochlear implant.

Yes, I blogged about Rush Limbaugh getting a cochlear implant. The day before Big Kid's first cochlear implant surgery we were driving home from the hospital and stopped at a grocery store to pick up milk. When I got back into the car my husband said, "You'll never believe this, but Rush Limbaugh just announced on his show that he's going deaf." He was right, I didn't believe him, but it was true. That was in October of 2001. Big Kid was implanted the next day, and Rush Limbaugh was implanted about two months later. And I still haven't met Mr. Limbaugh.

Whether they agree with his views or not, it's still fun telling people that Rush Limbaugh is totally deaf, but still doing his radio show w/use of his cochlear implant. My boys have the same implant. COOL BEANS!

More on Rush Limbaugh's cochlear implant:
     The Haney Project "Rush Limbaugh's Cochlear Implant"
     The Rush Limbaugh Show: Questions on the Host's Hearing
     The Rush Limbaugh Show: The Facts on Rush's Hearing

Oldest son is getting a 2nd CI

Hmmm... My oldest son is getting a second CI, and I'm finally revisiting this lovely old blog of mine. It's been about four years since my last post, and I see posts on the first page that are about seven years old. Yikes! After some lucky guessing, I figured out the passwords to this Google account and am back up and typing away. And I'm just not sure where to start.

Big Kid has had his first cochlear implant for almost 12 years. We've had absolutely no problems with his cochlear implant whatsoever, internal or external parts. Other than using them so much that some physical parts wear down a bit. We've discussed with him the option of getting a second implant for years, and he's finally now going for it. He knows he'll be able to hear better with the second "ear" (after much habilitation). It will also be nice to have another ear to hear with if the first one ever does stop working for whatever reason. We also now have the insurance to cover the surgery, while my husband is still on active duty in the Army. These are just a few of the considerations that we have discussed when thinking about a second cochlear implant.

Big Kid also wants to hear while he's in the pool, so he's been looking at and thinking hard about the Neptune processor. He would go for one Neptune processor and then hopefully hold onto a certificate for a second processor later. As an adult, I'm not too sure that's what I would lean towards, as I see some other huge advances coming with the AB processors, and I would probably choose two of the new ones, but this isn't solely my decision. My boy is now a teenager and wants to hear what the other kids are saying at the pool, go to a water park and be able to hear, so he very much likes what the Neptune has to offer.

The process is moving along quite quickly for us, and his surgery is now only nine days away. Looking back through my posts (I started with the oldest posts and read through most of them in the past couple days), I was reminded that after his first surgery it was almost a week before his balance improved enough for him to walk around again. Big Kid's balance is definitely an issue, with his inner ear malformations and whatever other issues he has. We have to be prepared that this may be a problem after this next surgery.

Big Kid also understands that once his second CI is activated, it will take a lot of work for his ear to really understand what it will be hearing. I know Big Kid is a great boy, willing to work hard when necessary, but reality is that he's also a teenager. I'm not sure what to expect.

How's he doing otherwise? He's had his first implant for almost 12 years. We are an Army family and move quite a bit. He's lived in 8 homes and is in his 11th school. Last year as a freshman in high school, he was fully mainstreamed w/o even an FM system and received all As and Bs, with mostly advanced classes. He received a B in Arabic, and I am not kidding about that. The class would use computers for part of the class. The headphones he used rested easily over his t-mic, giving him great access to the sound. Big Kid tested out of speech therapy in fourth grade. As for the FM system he's used in the past years, he chose not to use it this year at all. I don't know if it's because he was self-conscious about using it or not, but as long as he kept up with his classes, I supported his decision.

On the other end of the spectrum is my youngest son, T-Man. He is now in fourth grade, using his CI, but still prefers to communicate mostly through sign language. T-Man is deaf but also has some additional challenges. His receptive language with his CI is pretty good, but he is not good with his expressive language, and doesn't use much speech at all. His speech is still improving small bit by small bit, and we keep working on it. In my book, though, any and all communication is great.

My two boys have the same medical diagnosis for deafness, and both of their CIs are helpful to them, but they are each very unique in their own skills and abilities. Their cochlear implants are not a "cure" for their deafness, but definitely a tool that helps them to access sound. Our whole family continues to use and learn more sign language, too.

I'll post more later, especially re: the upcoming surgery, activation and habilitation. Big Kid has also said he wouldn't mind posting in the future, too. ;)

Whew! Update...

It's been a long while since my last post. My husband is in the Army, was in a unit that deployed to Afghanistan. To say our last couple of years was busy would be a huge understatement. I think we moved just after my last post, and moved again a few months ago. Whew! Matthew is now 11 and in his 9TH SCHOOL (I know, can you believe it?), fully mainstreamed in 6th grade and doing real well. Joshua is now 6, and in the first grade at a school for deaf children. He has been diagnosed with additional disabilities, and while he does get use of his cochlear implant, his main form of communication is with sign language. It's amazing how each child has the exact medical diagnosis (Pendred Syndrome: Mondini Dysplasia, Enlarged Vestibular Aqueduct, Hypothyroidism), but they are also so very different from one another in their skills and abilities. As I've always said, "What works for one child may not work for the next."

Unfortunately, we've seen some poor educational support in the last couple of years. It took the school district over a year and a half to get FM Systems (read: assistive technology) to use in school. Before this district, Matthew had used an FM in three other schools/districts, and of course that was written into his IEP. I won't go into detail what all happened when I was wrestling with the school district, but it really helped to find a lawyer who could help. Fortunately only had to drop his name, and the FM systems were ordered that week. While Matthew did very well w/o the FM system for OVER A YEAR, his teachers noticed a huge improvement in his comprehension and attentiveness in school once he had one (no kidding, really?). Joshua's discernment had greatly improved, too.

Joshua has the need for additional OT, PT and speech classes. The last district didn't have OT (so he tested out of it, of course), and spotty PT and speech. Fortunately, the program he is in now at a school for deaf children has ALL of those on staff. I was almost in tears, okay, I cried at his IEP meeting when I heard all of the support he would have at his school. We're still an Army Family, and I know that very well means we may move again. I try not to think about that, because I fear ever going back to a district like the one we just left.

Well, I'll post more. It feels good to be doing this again. Right now I'm headed toward a very large, fresh cup of coffee. One boy is already on the way to school, and two more need to get up. ;)