100th Post! And it is a special one!

Yesterday I thought I was going to have a really rough afternoon, as Peter had only napped for a few minutes. But he was Ok. And while we were chatting, he suddenly said:

I was pretty excited! I got both a sign and spoken word, when I wasn't even sure he had signed mom before!! So happy!

Cinema Sunday

More videos! I take so many because Peter acts so differently at home vs. at a therapist´s office, and I want to be able to show people what he is doing most of the time, especially when he just stares at the therapists and waits for them to entertain him ;)  Don't worry, the videos are all very short, less than a minute each.

The words of the week seem to be "hot" and "stop"!  Peter has been saying "hot" a lot- seeing the fire in the pizza oven at Safeway and saying it was great example of unprompted speech showing comprehension!  Another favorite word this week is "stop" though it often sound like bop :) he uses it for the water turning off, music box stopping, songs ending, etc. I didn't get a "stop" video, but I did get a "hot".

Peter is adding so much each week- we have been highlighting color words lately, and here he is signing blue for the first time (that I know) and approximating the word, too! So proud of him!

And then there is the "how can you resist when he asks like this?"

And finally, I have read so much (and watched) about how bad music can sound to CI people. I have also read lots of blogs of people with CIs who enjoy music. I think Peter enjoys it. He is starting to dance, and I couldn't resist this ;)

I just want him to thrive

Is that too much to ask? I want Peter to be a super-user with his CI. I want him to succeed in school, and worry about how to fit in yet another AP class in high school. I want him to learn to advocate for himself. I want him to get a scholarship to university- sports or academic, either would be OK! I want him to have good friends and enjoy life.  I hope everything we are doing now is building a foundation for future success. We are following enough people on this journey that I don't feel lost, but CI kids are still such a minority!

Universal Newborn Hearing Screening in California (Summary of all states) just started in 1998, and has become standard across the country only since 1999, as described in this NIH fact sheet.  And the FDA lowered the age guidelines for Cochlear Implantation to 12 months in 2000.  So the first cohort of early identified, early implanted kids is just getting to high school age! There hasn't been time for most local schools to have a true depth and breadth of experience with "today's" CI kids. So CI parents aren't alone, but we still have to navigate so many decisions on our own, use our gut instincts a lot, and we may go into schools where we are the first ones to educate them about what our amazing kids need to become those poster kids of academic success.

I wonder how the transition to our local school will go for us.  They take over responsibility for services to Peter at age three, and that transition/ hand-off to the local school district starts a year from now. I try not to worry too much, but sometimes it's hard not to after hearing so many stories about contentious IFSP/IEP meetings, and how schools with no experience can have too-low expectations of CI kids.  I will try to keep the worry to a minimum and just continue to educate myself :)

This week's video check-in

I need to write more, but I need to do a lot of other things more, too ;). Like cleaning my house, finishing projects, or taking showers. It's pretty sad when I am thinking to myself...I gotta try to get a shower at least every other day. Thank goodness I have been too busy to get my haircut and I can put my hair in a ponytail ;)

I am going to make time to update Peter's word list, as a couple therapists have asked for one. And I make time to do these videos, since they help the therapists see what Peter is like in a more natural setting. He will talk to the speech therapists, but not nearly as much as he does at home, and they can sometimes hear or see more on the videos than I can. The videos also show everyone on Team Peter that all the input is paying off!  In this video "I Want" is starting to emerge!

Just a note about how I do the videos- they are shot on my iPod or iPad, often with the forward facing camera, and then quickly edited/titled with iMovie on my iPad.  That app was a great purchase!

Infographic I thought was neat- ASL

I liked this, but remember- I am Swizerland, so even if I personally like ASL, I don't think everyone NEEDS to learn it. I hope with all the fun YouTube ASL music videos more people WANT to learn it :). I think it would be interesting to see if using more finger spelling and signs in the lower grades of regular schools would help kinesthetic learners, as well as visual learners, but I don't have a soapbox for the issue ;)

I want to be Swizerland...and a video

I like that Swizerland is neutral. I also like that they are tri-lingual and ready to defend themselves if necessary ;)

Having a deaf child means you get free entry into a world where so many of a parent's choices are judged by those who would not make the same choice. Technology, communication, and education are all hot button topics to some people in each "camp". I am incredibly lucky that I live in a region with so many resources. If I lived in the middle of nowhere I wouldn't have choices- there aren't a lot of Deaf Schools, so signing wouldn't be as viable, Oral Schools aren't everywhere, and certified AVT therapists aren't everywhere, so if I lived somewhere else I might be stuck with whatever the state gave me and be glad for it. But I am here. I am availing myself of everything I can, and usually I am happy I can do that.

But when I feel like there might be pressure to just use one approach I feel myself getting defensive. I would defend my choices if anyone at the school for the deaf railed on me for implanting my boy- but no one has, thankfully!  I know I need to respect the parents there (hearing and deaf) who have their own reasons not to amplify or implant their kids and who have just embraced signing. Likewise, parents may never sign, and throw themselves whole heartedly into an Oral or Aditory Verbal approach. If that works for their family I think that is awesome!  I have read many blogs where CI kids thrived with those approaches. But I am doing things in a way that feels right for me.

I love languages, and the more the merrier. If I can give Peter access to multiple languages, I will. Kids in Swizerland don't have problems learning at least two, and often three or four languages.  My friends who have multiple languages at home have kids who maybe started talking a month or two later than my kids, but they now read and speak in two languages at age 7.  I know Peter is a smart cookie- he is now catching up to about where 9-month old hearing kids are, according to a couple evaluation scales. Since he's 18 months old, that may not seem awesome, but he has made those 9 months of progress in Under six months, and less than two of those months with two ears on. If what we are doing is working so far, I don't see a reason to change. Of course if I feel there are issues I will make adjustments, but right now I am still figuring out what proportions of what ingredients are the best for us, and everything is staying in the mix.

Our mix is working well:

Music?

Great talk. Makes me think about how Peter perceives music. I know he likes music class, and I really hope we are helping train his brain to hear the beauty.

TED talk on Building the Musical Muscle (about music and CIs)
http://www.youtube.com/watch?v=bTE0MRRXNzs&sns=em 
(If there is no video above here is the link)


So much is being said right now about music and how CI recipients hear it. Just remember that brains are amazing, and they can learn more than we think;)

 ;)More hope for music! New Sound processing strategy being studied :)