Corporate Imprinting at its Finest

I couldn't help but buy this shopping cart for Ethan. It's a great tool for him in terms of PT since it's so light weight and he has to maneuver it around the house without putting any of his weight behind it. It's a good exercise in theory, but he hasn't pushed it once since I brought it home last week. He'd rather take the items out and throw them all over the house. He has also tried to climb into it a few times. That didn't go so well.

Here is a shot where I actually caught him signing, which is so hard to do since he never stops moving. He's signing cookie because there is a box of cookies in the shopping cart (he's holding them in the previous pic), he looks pretty excited about it for some reason!

Nice DOES Matter.

I owe a long overdue thanks to Eileen for handing off the “Nice Matters” blog award to me a few weeks ago. What an honor it is to receive it from someone who I am so humbled by on a day-to-day basis.

When we found out that Ethan was deaf (and that it was due to cmv), I was hit by a wave of grief and anxiety. I couldn’t imagine my child growing up without hearing our voices, but even worse, I had to accept that I might not ever hear his. I quickly delved into online communities where I could find shared experiences with other parents facing the same situation. (Because these families don’t exist in our little community.)

The first group I joined was Listen-Up. I immediately started learning more than I ever thought possible on all angles of hearing loss and parenting hard of hearing children. One of the first voices on that list to speak to me was Karen’s.

Karen is a deaf mom to 3 children who are also deaf/hoh. I remember posting a message to that group early on, before Ethan was implanted, about how he was always “babbling” with his hands. I wondered if this was normal development for a child whose only language was ASL. Karen assured me that it absolutely was, and proceeded to share some of her experience with me. She works with a noble organization called Hands and Voices; they are committed to educating and supporting families on the variety of communication options available for deaf children. It’s very important work in an arena where there seems to be a little too much pressure (and occasional dogma) on families to choose certain paths.

So thanks, Karen, for bringing me into the fold and for following Ethan’s story. You have such a positive impact on so many people, in both real and online communities.

Signing & Speech

I’m so happy to report that Ethan seems to be making some progress with speech lately. He’s taking a very interesting route towards speech, not the usual babble stage followed by the meaningful repetition of consonant vowel combinations (bu-bu, dada, mama). This seems to be entirely his own process; he’s not going about it in any kind of typical fashion. Go figure.

Ethan has an uncanny ability to repeat vocal and musical patterns back, in nearly perfect pitch or intonation as well as rhythm. He does so by making a series of short or long humming types of sounds. He is basically trying to speak without opening his mouth.

Our speech therapist (who rocks!) was telling me that a lot of Ci kids will experience growth in one area at a time, either auditorily or with speech. It seems that Ethan has been fine-tuning his audition all these months. He recently heard the Old McDonald song as played by an electronic toy. I’d say he heard it play through 2 or possibly 3 times at the most, and then he looked at us and proceeded to repeat the musical pattern pitch for pitch with the perfect rhythm. We were floored. (As far as I know, that was the first time he’d ever heard that particular tune.)

In speech and at home we are working on showing him our mouths and exaggerating those movements while we speak. We’re also teaching him to hum the “mmm” sound while he signs the word "more". At least that way we are getting him started on the path of vocalizing while signing.

He continues to sign all the time and now he’s starting to make his little vocalizations with the signs. For instance, he will sign the word "cup" while vocalizing the sound “uh uh” over and over. He can’t hit that k or p sounds, but the vowel in the middle is no trouble.

I'd like to create a list of his signs as his vocabulary builds each week. It’s over 100 signs now for sure. He has an remarkable ability to learn them from just one viewing, and then call them up anytime he wants to use them. It’s that native language thing through and through. He’s a natural with sign and will probably be a visual learner throughout his lifetime.

So though the speech isn’t coming at quite the pace or clip that we were expecting, this has certainly been an interesting process, one that cultivates a profound sense of patience. It makes the good old days of teaching 7th grade seem like a breeze.

Wordless Wednesday

Ethan, just before his cochlear implant surgery last year.

September stuff

Ethan and his daddy share a snack in Portsmouth, New Hampshire.

Eboy and daddy boarding Skybus, E's first big trip!

Ethan playing (and signing) with one of his favorite people of all time (and mine), his Fairy-godmother Misha. This was taken at the end of her first day in graduate school. She will one day become a speech language pathologist.

It's sinking in.

One year ago today, Ethan was recovering from his first Ci surgery. We were in the hospital over night for that surgery, which is unusual as they typically send the patient home the same day. We got to stay due to the fact that Ethan had a history of apnea and we weren’t sure how he’d respond to the anesthesia. He hasn’t stopped breathing since May 11, 2006, so I don’t know if we can use that experience to get ourselves admitted over night again. I find it appalling that they would send a small child home the same day after such an invasive surgery, but the recovery is pretty amazing and easy for these little guys. Still….my mind is filled with what ifs.

Ethan and I waiting to be released from the hospital after surgery.

This time around has produced similar emotions on some level, but we’re feeling much more informed and calm about everything. Last year we felt a sense of urgency, we knew he was losing valuable language acquisition time. We desperately wanted him to hear, to be able to take part in the culture of our world, the hearing world.

Now he hears and shows some understanding of the language around him, so that sense of urgency is gone. (And now I worry that he won't be able to take part in the deaf world and their culture. Why shouldn't he be able to do both?) Surgery feels much more elective this time around, probably because it is. You can imagine the potential for guilt and second guessing here, but I really feel that we’re doing the best thing we can for him in the long term.

We believe that having another implant will enable him to hear much better in noisy situations as well as locate sounds in his environment. Ethan and I ran into a friend on the street the other day, she was about 10 feet away when she started speaking to us. He couldn’t hear her because her voice was competing with the sounds of the street as well as other voices around him. She would have had to get down to his level and put her face in front of his in order to communicate.

The next year is going to be very interesting. How will having two “ears” to hear with change Ethan? Will it improve his balance? Will he still need physical therapy one year from now? Will his sensory processing issues be noticeably alleviated? Will his progress towards speech be facilitated in some small way?

We’re of course immeasurably grateful that he can hear at all, but this, this is beyond my wildest dreams for him.

Holy Cow!

We have insurance approval for a sequential bilateral cochlear implant for Ethan!

We have a surgery date! October 30!

I'm going to go do some freaking out now. I'll post some thoughts about this later as they unravel in a coherent form.

Family First

The three of us flew to New Hampshire last week! Ethan was fantastic, thanks to the amazing technology that is the portable DVD player. Our flight left Ohio in the evening, right around the time that we usually try to wind Ethan down. He skipped his nap that day and was really tired and crabby as we boarded the plane. Add the over stimulating experience of an airport, security, and having your car seat loaded into a 2x2 ft. space and you're looking at the makings of a meltdown. That DVD player was worth its weight in gold that night.

The portable video gods smiled again the following day during our 3 hr. drive to Aunt Margie's in Maine, and again a few days later on the drive back to Uncle Dan's. It was wonderful to see everyone, especially the kids since they are growing up so fast. Ethan had a total blast and was generally very happy and well behaved. Not bad for a boy of 2.

New England is so beautiful. The weather was mostly sunny and chilly and the leaves up there are just starting to change. I love the laid back vibe and friendliness of Maine - I could easily seeing living there someday. (I say this every time I leave Ohio) And Portsmouth, N.H. is a beautiful little town with so much character. I loved it. We watched a bike race that ran through down town, for a moment it felt like we were in the middle of an L.L. Bean catalog. Cliche for sure, but definitely true.

It's time to put away the summer shirts and shorts and unpack the warm cozy clothes of autumn. Warmer clothes are spinning in the washer as I type.

I'll post a couple of pictures when Rich returns, he's working in New Haven this week and has the camera card reader in his brief case.

{Ci note: this was the first time we've used the personal audio cable that is one of Ethan's Ci accessories, one end plugs into his ear piece and the other end goes into the dvd player, so he is essentially pipelined directly into the audio from the dvd, it was pretty cool! someday he'll plug directly into his ipod}

Wordless Wednesday

Today is my last day as a 36 year old.

"The Good" by Rachel Coleman

It was you and me and the whole world right before us...
I couldn’t wait to start.
I saw you and dreams just like everyone before us, we thought we knew what we got...

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
No, maybe we won’t find easy
But, baby, we’ve found the good!

*********************************************************
This song comes from one of Ethan's Signing Time videos. They have indeed changed his life by giving him the gift of sign, which he freely learns from Rachel but not so easily from mom and dad. She's magical and we love her! This song reminds me of a new friend I've made, Signing Time has also changed her daughter's life.