Rockin' Right Along

Last Thursday was a very busy day. We started it off with a trip to Hopkins for an audiology appointment. I am glad to announce that it is our last audiology appointment for three months! YIPPEE!

My baby rocked it out in the soundbooth! When they played the first tone though, Aiden looked right over at the rabbit, which I have to admit is a bit "Chucky doll" like, and started to scream. (FYI about the soundbooth - tones are played at different frequencies and when Aiden responds to a sound, they reward him with showing him that scary rabbit in a box playing an instrument. I keep him distracted by showing him pictures in a book or playing with some toy so he's not just watching and waiting to see the rabbit). We thought he'd shut down after that and I'd have to reschedule, but he manned up and we finished the soundbooth WITHOUT showing that scary rabbit anymore!

Aiden's left ear has not only caught up with the right, but surpassed it by 5dB! So Aiden is hearing at 15 to 20dB across all frequencies and his speech awareness threshold is at 10dB - in both ears!!!!

Yep ... 10dB! This is the same baby who had NO RESPONSE on his ABR at 120dB! This is the same baby who couldn't hear a jet airplane (without his CIs), if he was sitting right next to it. This is the same baby who I worried and fretted (and truly continue to do so) over for the past year wondering if he would truly hear my voice one day.

and now he's hearing my whispers of sweet nothings. my whispers of I love you.

AMAZING. JUST SIMPLY AMAZING.

After the soundbooth I talked to our audiologist about my concerns with Aiden's expressive spoken language. He will imitate the /ah/ and /m/ sounds, is starting to babble a little bit more (ba-ba's, na-na's, a-ba's, "mar" for more) but still not as much as we thought he would by now. She explained how important the receptive (listening & comprehending spoken language) part of learning to speak is; that with everything we "feed" into Aiden's little brain, it is more important right now that he is comprehending what we say instead of him just constantly repeating what we say. The better the receptive base, the better the expressive spoken language. She also reminded me that hearing babies hear and take things in for a good 9 to 12 months before their first words ... and Aiden's only three months hearing.

She continued, "For example, we know Aiden understands when you say "airplane" because he'll sign airplane", and as soon as she said it, Aiden looked at her, smiled, and signed airplane and belted out a good "aaaahhh" (without her signing it). We just laughed and clapped! One example of how we know Aiden is not only hearing us, but comprehending what we are saying to him.

After our Hopkin's appointment, Aiden and I headed down to the Baltimore Harbor to have lunch with a family from Texas. I "met" the mom through the Yahoo group CICircle. They were in town to have their youngest son's second CI reimplanted by the same surgeon who performed Aiden's. This was going to be the little boy's third surgery on this ear and they had almost given up hope until finding Hopkins. This mom and I talked via email for a few weeks before their trip. Being from Texas, I was so excited to meet up with them. The one thing I did not know, until the night before, was that this little boy's mom and dad were both Deaf as well (I found this out as she called me through relay). All this time I have been communicating with hearing moms of deaf children ... I guess I hadn't really even thought of what I'm missing out on, until now anyway.

As I was very excited to meet them, I was nervous at the fact that 1) my signing abilities are next to none - except for the handful of baby signs we use with Aiden (well I can fingerspell, but that doesn't make for the easiest of conversations); and 2) I couldn't believe I had just then realized the very few contacts I have with Deaf parents with D/deaf children. I have to admit that I was relieved when my Texas friend communicated orally and was a great lip reader. She helped me through conversations and signing with her husband AND made me realize I needed to learn a lot more signs.

What an experience it all was. Absolutely wonderful. Both mom and dad are part of the Deaf community and I was intrigued by their life story and the decision they made to get their two youngest boys bilaterally implanted (their oldest child is hearing) although neither mom nor dad have any type of aided hearing (mom is possibly considering a CI herself but wants to take care of her kids first). It tore my heart apart for her that she didn't have a lot of support from friends and family within the Deaf community who were anti-implants. She has been through a lot, but fully believes in what she wants for her boys and keeps trucking along. I admire her for her strength and perseverance.

We are going to meet again this summer when they fly back up for activation. I can't wait! I found my visit with them to be heart warming, a tiny glimpse into Aiden's world, as well as into the Deaf community ... I can't help but imagine everyday what it would be like for him without CIs or truly, what it's like to be Deaf. It's nice to meet and befriend people who are there. Thanks for an enlightening time!

Older in Many Ways

Ryan is an amazing child, we knew this from the day he was born. He has that "old soul" type of personality ... very loving, deep thinker, never meets a stranger, laid back, go-with-the-flow type of kid. When I got pregnant with Aiden, I was very excited for him to be another big brother ... and he is absolutely fabulous with his little bro.

The other day Ryan came to his dad and me about a texted conversation he had with another "gamer" on XBox Live. Ryan saw that this player was Deaf through his profile and was excited to talk to this player. The conversation proceeded:

Ryan - "What was it like being Deaf growing up?"

Player - "I learned sign language so it was fine."

Ryan - "Wow. That's cool. My baby brother was born deaf. We're going to get him cochlear implants."

Player - "That's too bad. That's not how God intended him to be and your parents are going against God's will."

Ryan - "Well, that is my parents choice to make and I can't wait for my brother to hear me and talk to me."

When Ryan told us this, he asked, "Why would people get angry about doing something to help Aiden hear? We don't think it's wrong if they choose not to get cochlear implants." Coming from an 11 year old.

Everyday Ryan spends time with Aiden. Everyday Ryan plays with him, reads him a book, sings to him, makes him laugh. Everyday Ryan wonders what it's like to be deaf, what his little brother's silent world is like, we all do. Soon before the incident above happened, I overheard Ryan talking to Aiden:

"You are just the coolest little brother and I'm so lucky to have you. I love you so much and I can't wait until you can hear me tell you that!" Tears and a big smile from a proud mother.

This was Ryan's first incident with someone who opposes cochlear implants and I'm sure it won't be his last. Ryan didn't judge this person for their choice and he still doesn't. My 11 year old has confronted this before either my husband or I have had to and he handled it beautifully. High five baby!

Whole New World

I went and had dinner & drinks last night with one of my "bestest" friends, she's actually my sister I've never had. We always have the best conversations. I was telling her about my newest discovery with Aiden's world - the deaf community. After learning about Aiden's deafness, all I could think of was, he WILL hear and speak one day, and that's that, he will be a part of our hearing world. And hopefully he will (we still need to wait for the MRI to tell us if he is a true candidate for cochlear implants), but he is deaf and could also be part of a community that seems to have their own culture and I want him to know this part as well. As Aiden's family, we need to have a respect for this "culture" in a way we would respect the culture when visiting any foreign country. I'm still learning so much about this, so my big question now is, if Aiden is a candidate and successful with his implants and hearing/speaking, do we still teach ourselves and Aiden to sign or not?

Of course I have always known about sign language, but just that it was out there. What I've come to learn is there are different types of communication for deaf people. Sign language - American Sign Language (ASL) is not easy to learn and when translated word for word is completely different than spoken English, it's like learning a foreign language. I also didn't realize there is another type of sign, called SEE, which is more in tune with spoken English and is another option to teach Aiden and our family. There is an option to cue, which I don't know a lot about yet either since we have decided from day one that we want Aiden to hear and speak - this is the auditory verbal route. I'm still learning, so I'll fill in more about it later.

Before Aiden was born we discussed using baby signs with him for easier communication as a toddler. We saw our niece using these signs at 1 years old and were amazed at all the signs she knew and decided we would use it too. Little did we know that our child would be born with profound hearing loss and now we actually question the use of teacing him even basic signs. We question this because we are praying our child will be able to hear using cochlear implants and combined with the hard work of auditory-verbal therapy, he will be able to speak and listen. This therapy does not include any type of signing. In fact, it's suggested not to teach signing, so the sole focus is learning to communicate through listening and speaking, not signing (the implants don't just turn on a "hearing switch", it is very hard work to teach a deaf/hoh child with an implant to hear and speak and takes a lot of time and dedication, it's very different than teaching a hearing baby to speak, but the outcome is tremendous!).

Again, we are choosing for Aiden to get cochlear implants so he has the chance to speak and hear, that is our choice as his parents; we want our son to be a part of the hearing world ... but Aiden will always be deaf, there is no changing that and we have to ask ourselves how will we communicate with him when his "ears are off" or not working or if he chooses one day not to use them? We don't want to completely take away this "culture", this "community" even though we choose to (hopefully) have him implanted. As he gets older, we want to teach him all about the deaf community and the options he has and respect the decisions he makes, whether it's to communicate through hearing/speaking or through sign or both. At least we are lucky enough to give him the choice in how he communicates.

So for now, we will continue to work hard at our auditory-verbal therapy and pray that Aiden will one day speak and hear. But we will also continue to learn about this new world that has become part of our journey.