Sunday, January 4, 2009

Preparing for CI Activation

We're in the final countdown... 5 days. Here's what I'm doing in preparation. Mostly I'm doing some reading, lots of reading. The following list should serve a few purposes, least of which is to toot my horn. First, if there are parents of newly diagnosed children, it can serve as a great place to start. Second, for those experienced parents out there, if you have other ideas besides what I'm already doing, I would love more suggestions! Third, for all of my friends and family who read this blog, and to whom much of this may sound foreign, I hope you gain some insight into what we are doing for Lucas to prepare him for the rest of his life.

1. I'm taking the John Tracy Clinic correspondence course. I'm on baby lesson 3, which is perfect for his age and soon to be activation. Up until this point, I've been unable to use many of the suggestions because of Lucas's lack of access to any sound. That will soon change. I HIGHLY recommend this course for parents of deaf/HOH children.

2. I'm also reading A Father's Love, a book by a father of a 6-year old girl, bilaterally implanted with perfect oral language. The book describes the process he went through, step-by-step, to teach her how to listen and speak perfectly. I'm also corresponding with him regularly, and he's helping me to make some really important decisions about Lucas's deaf education.

3. I continue to read some PHENOMENAL blogs about children with successful cochlear implants: Drew, Gage and Brook, Christian, Gavin, Landry, and others. I regularly read Deaf Village, which showcases blogs about deafness (and on which Lucas's blog is highlighted when I post). And I read 2 blogs of kids that are at pretty much at the same point that we are with Lucas, Aiden and Mikaela. These mothers have been a great support to me over the past few months.

4. I read lots of lots and posts on the following listservs: cicircle, Listen-Up, LVAS, and learn2hear. Cicircle also has a website, that has a lot of great information. These listservs provide me with a lot of information that I wouldn't even think to ask about yet, but that I file in the back of my head. I don't comment much, because I don't have much to add, but I read and learn a lot!

5. NEW: I'm educating myself specifically on oral deaf education, and what needs to be done to mainstream Lucas.

When Lucas was first diagnosed, we were like "great, let's learn sign language." We've learned since then that there are SO MANY more options to being deaf than sign language. One of my first posts on this blog was about our choice of Total Communication (TC) as our communication method with Lucas. That was a great choice for him 6 months ago, but not anymore. What was right for Lucas 6 months ago, today and 6 months from now can all be very different. It's good to be flexible (and realistic). I feel like TC may give him both mediocre speech and mediocre sign language (not even ASL). Our only goal for him right now is to have excellent, if not perfect speech. If for some reason he does not receive a lot of benefit from his CI, then we will re-evaluate. For now, we're taking an Auditory-Verbal approach, but we're still going to use some signs with him (in the same word order as English) unless we feel that it's getting in the way.

Since it is our goal to mainstream Lucas by first grade (if not sooner), then we need to learn as much as possible about the subject. That's one of the main reasons that I will be taking a leave of absence from my teaching job. We're not going to sit around and wait and see what happens. We must be proactive. This is when he must begin to develop the oral language and hearing that will guide him through the rest of his life. There is a window when this acquisition must occur, and we're not going to miss it! I'm also preparing for Lucas's upcoming IFSP review in February. I need to have very specific ideas about the goals and services that he needs to meet our goal of a mainstreamed oral education. I plan to visit the HOH preschool program in our area, another reverse mainstream preschool in our area that would provide ample speech support (as another preschool option), the HOH kindergarten class in our area, the Pennsylvania School for the Deaf, the Clarke School for the Deaf, and others. Even if that's 2+ years away, we need to have an idea what we're working toward.

I know that Lucas will not hear me speak on Friday, but he will hear something for the very first time! I'm so excited, thrilled and scared to death at the same time! One thing is for sure, it will be a very, very exciting day. Any suggestions for my continued preparation and future reading are highly appreciated!

6 comments:

VBnBama said...

...and I can't wait! so very exciting.

tammy said...

I have chills just thinking about this big day! You all are doing such a wonderful job with Lucas! He's such a lucky little boy!

Faith said...

Wow!! I am happy for you and your ability to take a leave of absense. I know you must be thrilled to take the lead in his acquisition to sound, speach, and a new path! Congrats!

If you have time on the 8th, look me up and visit me on the 4th floor. I am in CHOP as Mikaela had another bowel obstruction and had surgery again on the 4th. No time to post on the blog but will soon.

Iz and K. said...

We are so happy for you!!! I can't wait to hear how activation was!!! :):) Very exciting!! Good luck with everything!!!!!!!!!
:-)

kristine N said...

I'm so impressed with the approach you're taking with Lucas. I knew you were a proactive go-getter, but I didn't realize quite how much you throw yourself into the things you care about. It's wonderful reading about what your family is experiencing--thanks for sharing.

Christian and Lily's Mommy said...

You're doing such a great job! I 'm so excited for you and what the future holds for Lucas. It's a good idea to keep an open mind regarding long term communication strategies. You'll find that you'll just end up following your little guy's lead...he'll let you know what he needs :)