To ASL or not to ASL

(or, Another Reason Everyone Should Have an Apple iPhone)


Dad to Toes and I always planned to introduce Erin to a broader American Sign Language vocabulary than the typical half dozen "Baby Signs" that are so popular with parents these days. But, since she developed spoken language so quickly, we kept putting off learning ASL and broadening Erin's ASL vocabulary. It wasn't really intentional. Time just flew by and the urgency waned.

ASL is often a controversial subject. Strict AVT proponents don't encourage even lip reading in fear that it might detract from the child's ability to develop spoken language. On the opposite side, strict ASL Proponents argue that ASL is a deaf child's "native language" and should be the primary (if not only) form of communication utilized - regardless of what form of communication the child's family uses.

We have always taken a middle-of-the road view on the issue. We have never been the types to buy into any one path - we never felt there was a right or wrong way to teach Erin the skills she needs to succeed in life. So, we are always re-evaluating what Erin's needs are.

We have chosen to encourage lip reading - and as a result, we are able to have basic conversations with her even when she is not in sound. But there are times that Erin misses words and becomes frustrated that she cannot understand what we are saying. When it's an hour past bedtime and she's called us back in for the third time and her processors are in the drying unit... the last thing we want to do is pull out a processor so she can catch the missing word when we are trying to tell her she needs to go to sleep so we'll be ready to visit the *zoo* tomorrow. So, we've realized we need to re-start our ASL introduction.

What I've found really fascinating is that recently Erin has really been showing an interest in learning more signs beyond the baby signs. I don't know that she even understands that this is another language or that she could communicate completely with just her hands, but it's made us really thrilled about learning along with her.

I've been planning to check Signing Time videos out of the library to get things rolling. They are basic and child friendly and I have heard nothing but positive things about them. But I've been concerned that I may have a hard time convincing Erin to replace Blue's Clues with new videos during her TV time.

Then tonight I was checking out new Apps on iTunes and stumbled on the Best App Ever - Signing Time for the iPhone! It demonstrates the same signs that are available on Volumes 1 and 2 of the Signing Time Videos, complete with videos by Rachel Coleman. And all for $4.99. How awesome is that??

Erin loves playing preschool games on my phone when we're in the car or anywhere else she needs a distraction. She is going to flip out when she's checking my phone out the next time and finds a "game" that shows her new signs.

I am so excited that we found a great first step into ASL. Obviously, 48 signs is only a start. I just hope "zoo" is one of them.

You know that saying...

... "Never repeat anything you wouldn't want your child to say back to you"?

Well, Erin recently started turning the tables on us during some of our "therapy sessions" (Read: reading stories before bedtime).

Priddy Books are still a huge favorite. Once she was able to verbally label every picture with ease, we moved on to asking her more broad questions when we worked on receptive language skills. We'd ask: "Can you show me a boy?" or "Can you show me which animal is biggest?" At each phase, we would switch gears to working on expressive language... For example "Can you tell me how this boy is feeling?" or "Where would you use this toy?"

Recently, we've moved to identifying groups "Show me some things you would wear on your feet." or "Show me which animals you would see at the zoo."

The other night, while reading one of her favorite Priddy books, Erin announced she was going to read to me instead.

I was open to a night off, so I gave her the book. I assumed she would point to a picture and ask me to label it, an activity we did daily her first year post-activation. But, instead, she very proudly took the book onto her lap and said:

OK, Mommy. Show me something that you'd wear to the beach. Good job! OK, now show me something you use to make dinner. Good job! You're so smart! OK, show me something...


It was so much fun! What I found most amazing was that she was truly coming up with her own questions. I don't think she repeated a single question I had ever posed to her - they were all original.

I'm starting to wonder if maybe I can sit her at the table with a book and tell her to do her own listening games now.


(kidding)

Sequential Bilateral Cochlear Implant Surgery

I know, I know... I am really behind in my posts. I have so much to tell you all about how Erin is doing. I want to share how her first 2/3 of the year of her first IEP is going. Where she falls within relation to her peers. What our recent struggles have been.

(Look for my upcoming post about what happens when you put a defiant three year old who happens to have $14,000 (est) worth of electronics within her reach into a time out alone). And I also need to get some new video up. (I'm really wishing I had video of the timeout... or maybe not. Cochlear might not have been so understanding had they actually seen the circumstances.)

But, first... I really want to share an amazing video of a Sequential Bilateral Surgery that was performed a couple days ago by Erin's surgeon, Dr. Clifford Megerian. Her amazing audiologist, Dr. Gail Murray, was also there and offered excellent information beyond what the surgery demonstrates.


Before you click the link, I want to offer a warning. Particularly to "new" parents.

Much of this surgery is filmed through a microscope. So it looks much more terrifying than it really is. I intentionally avoided all surgery pics and video before Erin's surgery, and I am glad I did.

So, if you are new to the process...please, please don't click this link. I am only able to watch it comfortably because Erin is more than a year post-surgery. As parents, one of the most important things at this stage of the game is to not overthink the details. Leave that to your child's surgeon.

On that note...

Sequential Bilateral Cochlear Implant Surgery - 2/24/2009

I've mentioned before how amazed I am by Erin's small incision. After seeing the surgery, I am even more amazed.

Thanks, Dr. Megerian! As if we weren't grateful before. Now we have the video proof of how much is involved.

FM Soundfield and an Update

I thought it might be beneficial to write a bit about the FM Soundfield System that the school "installed" at Erin's preschool.

I always envisioned soundfields to be huge, cumbersome systems that require wiring and speakers mounted around the room. But I discovered it really doesn't need to be that involved.

The system that the school recommended is very basic. It is a single speaker, about the size of a loaf of bread. It has a microphone that hangs from a lanyard around the teacher's neck.



It is a 705iR Lightspeed Portable Infrared Audio System.

The teacher uses it any time there are group activities. Generally, the only true group activities at Erin's preschool are Morning Meeting (Circle Time) and Afternoon Meeting. Each "Meeting" is about 20 minutes long. So, she is really only using the system about 40 minutes per day on a regular basis. But it is a very critical 40 minutes. Most of the day's instruction is built into the organized meeting.

The group sings a welcome song, then the teacher discusses the day of the week, the month and the season. "Jobs" are distributed by pulling name sticks from a jar. The teacher holds up a name stick, the children read the name and the child whose name appears on the stick spells his or her name outloud, then chooses a "job."

The teacher then goes over what activities are available for free play and what craft the children will be doing that day. The group then sings a song or has another group activity. After this is done, the teacher removes the microphone, turns off the FM System and the children run off to whatever activity they are most interested in at that moment.

And that's it!

It doesn't seem like much, but it is building a foundation. A foundation of how she will learn to interact with teachers in a school setting.

It has been a hit. The teacher mentioned that she doesn't have to strain her voice as much to be heard... and she has also noticed improved attention from all the kids during "meetings." We couldn't be more thrilled to have the system in place.

It is hard to definitively measure at this point how much the system is helping her. But, I feel very confident that it is having a positive impact. Not only for Erin, but for all the kids. Erin will always have to work a little harder than others to hear what her teachers are saying. Having the FM system helps to bridge that gap. And if in the meantime it helps her schoolmates focus, then all the better.

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You're probably wondering why I finally jumped on and posted an update after so long. Well...

Today was one of those days when I realized just how far we have come. I had two defining moments and wanted to share.



The first was this morning at school drop off. After we went to the alphabet posted on the wall and spelled "Erin", "Mom" and "Dad", and gave big hugs, little hugs, big kisses and little kisses, I settled her into her second breakfast of the day with her friend, "Janie".

It was one of those days where she was almost shooing me out the door. So, I was able to hang out at the window in the hallway and watch her with her friend.

While the two of them enjoyed their breakfast, Erin pointed to a large dollhouse that is new to the room and said "Janie, look at that big house! I'm going to play with that big house after I'm all done. Do you want to play with that big house?" "Janie" said "Yeah, sure!"

It seems like such a small thing. But, I was so moved to watch her interacting with a friend and planning out a play strategy for the morning. She was having a conversation with a friend over fruit loops and milk. It was one of those moments where I realized just how truly mainstreamed she is now.

All parents love to watch their kids enjoy time with a friend. But, for me today the moment was especially sweet. I left the building with tears welling in my eyes. Another mother was coming in the door and gave me a knowing smile, laden with sympathy. But, what she didn't realize was that my tears were tears of joy. It made me chuckle to think of the days when Toes was an infant when I walked out of the building with my heart breaking to leave her behind. Think of all the emotions that parking lot has seen!

Then, tonight at dinner, Erin grabbed a Highlights magazine and started looking it over. (Yeah, I know... not the greatest habit to encourage, but when Dad to Toes is out of town, there's a whole lotta multitasking going on.)

Anyway... she pointed to the picture of the magazine's editor at the front of the mag and said "She is the author."

Wait... did I hear that right?

"Erin, she is the what?"

"She is the author. She put all the words in the magazine. See? All these words. She's the author."

She picked this up from a single conversation we had *months ago* about Margaret Wise Brown's photo at the back of Goodnight Moon.


I go days and sometimes weeks now without even thinking about Erin's disability. And then I have a day where I remember. And these small moments - these ordinary miracles - pop up and remind me.


She makes me so proud.

Broken

Once again, I have no words.

Ben's cancer has spread aggressively since July, when his intensive treatment ended.

Please keep this family in your thoughts and prayers. No parent or child should ever have to endure what they have been through.