Thursday, November 14, 2013
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!
Sunday, November 10, 2013
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?"
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 ;)
Sunday, November 3, 2013
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 :)
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 :)
Saturday, November 2, 2013
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!
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!
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