My poor neglected blog. I guess that is what happens when you juggle lots of things. I have been super busy working with Peter, plus doing costumes for my second grader's school play, and my iDevices all need to be cleaned out so I have enough memory to film and post videos....oh well.
Anyway, since this blog is supposed to help me document progress, I wanted to say that Peter let me know when the batteries in one of his processors went out! He has occasionally brought his BTE processors to me when they fall off, but he doesn't wear them all the time (as he has a habit of throwing things, and I don't want them thrown!) but yesterday he looked up at me, held out the processor for his Neptune (which had been tucked in a vest pocket) and said "Uh oh!". The headpiece (Or coil) was still on his head, so it wasn't that, then when I looked at the processor it had the flashing orange light indicating it was about to shut down because the battery was almost dead. So it could be a total fluke, because there are still plenty of times (like right before nap, or a tantrum) when he purposely takes off the headpieces. If he is not mad he usually leaves them alone, so I don't think they bother him, but this was the first times he called attention to it not working, not just that it had fallen off. So...he is bonding with them? I hope so. He doesn't seem to mind hearing. And I am pretty sure he likes hearing, especially listening to fun kid music.
When I told my husband that this was just the start of "reliable reporting" and that the continuum would stretch for several years until he could manage and trouble shoot any and all of his own hearing technology my husband was a bit surprised. And when I think that even after he is in grade school, and can tie his own shoes, and take the bus on his own, that I will still need to play a part in making sure things are working optimally it is sometimes daunting. But taking care of things while helping a child grow into their own responsibilities is what parents do, right?
Sunday, March 16, 2014
Wednesday, January 22, 2014
Two words!
Green Hat! Who knew a construction worker's helmet could be so exciting? We were driving by a new group of houses going up near Samantha's preschool, and I pointed out all the diggers doing their digging. There was a guy with a red hard hat on, and red has been a popular word for Peter lately, so I pointed that out. Then he said "green hat" (sounds more like " eee ha") and I looked, and sure enough, the rest of the guys, and one who had just joined red had, wore green hard hats. This was his first spoken, spontaneous, two word combo :)
Granted, he has been saying two one-word sentences, like Blow. Bubbles. But there has been a pause. He has also signed a word and joined it with a spoken word, like "baaaa" SHEEP, so this not completely out of the blue, but I am still happy, proud and excited that he is starting to use two word spoken phrases. "Bug Bug school" is another one, and color words paired with a noun are burbling out too.
Peter 's AVT therapist commented on how amazingly well he is doing, and how quickly he moved to two word phrases, with only 8 months of hearing under his belt. I fully credit the use of ASL from day 1 as helping me build a language foundation, especially since the hearing aids gave him no help with speech. Now that he is hearing I also think our Music Together classes and CD's and even though I don't sing well, my singing random songs throughout the day is helping a lot as well.
If the link below works, it is a short news clip about CI's and music therapy bridging the gap from silence to sound
http://youtu.be/geKdOyJOoA0
I think Peter is doing so well it is time to prune back anything that isn't helping....namely the services offered by the county. The people there are all really nice, but I think I can use those two hours to do something a lot more useful...more on that later. (Later is another new spoken word and sign)
Granted, he has been saying two one-word sentences, like Blow. Bubbles. But there has been a pause. He has also signed a word and joined it with a spoken word, like "baaaa" SHEEP, so this not completely out of the blue, but I am still happy, proud and excited that he is starting to use two word spoken phrases. "Bug Bug school" is another one, and color words paired with a noun are burbling out too.
Peter 's AVT therapist commented on how amazingly well he is doing, and how quickly he moved to two word phrases, with only 8 months of hearing under his belt. I fully credit the use of ASL from day 1 as helping me build a language foundation, especially since the hearing aids gave him no help with speech. Now that he is hearing I also think our Music Together classes and CD's and even though I don't sing well, my singing random songs throughout the day is helping a lot as well.
If the link below works, it is a short news clip about CI's and music therapy bridging the gap from silence to sound
http://youtu.be/geKdOyJOoA0
I think Peter is doing so well it is time to prune back anything that isn't helping....namely the services offered by the county. The people there are all really nice, but I think I can use those two hours to do something a lot more useful...more on that later. (Later is another new spoken word and sign)
Monday, January 13, 2014
Sunday Cinema
The week just started, and I am already behind! Here is a quick video update of some new language.
Please know that I delete far more video where Peter says nothing, screeches, or gets distracted! But he is doing well, and we are so proud of him :)
This is "family" words:
Please know that I delete far more video where Peter says nothing, screeches, or gets distracted! But he is doing well, and we are so proud of him :)
This is "family" words:
I kept trying to get him to say "Nana"!
Nana' s hard work over thanksgiving paid off!
Peter loves his sisters! And the dogs, too?
Thank you!
Monday, December 23, 2013
Holiday Madness, Holiday Gifts
I am so far behind in everything! Not just Christmas, but everything! I just went gift shopping today, hardly anything is wrapped, and still several people will be getting I.O.U.'s in their packages. I still need to clean the house for Christmas Day company, and there are still cards on my table that haven't been mailed. And I have just plum given up on getting any more projects done, or putting out more decorations, or anything really. I was wiped out and sick as the school semesters finished, and it has taken until now to get my feet back under me. But enough of the whining!
I have really wanted to update Peter's word list, and since we filled out The MacArthur-Bates Communicative Development Inventory for our IFSP meeting, it should be easy. But every time I turn around Peter is adding another word! Some in ASL, some spoken, some both! I am so pleased with his progress! And he is starting to put two words together!!! As I saw with my girls, and I predicted Peter would do the same, the phrases are one spoken and one signed word. "More" MUSIC, and "dada" WORK have come out so far, and I can't wait to find out what is next. Peter is really into colors, so I am curious to see if he will use them in a two-word phrase. I have noticed that Peter will start using a word in ASL, then shortly thereafter say it, or try to say it, so I have no problems with him using ASL, since I don't think it is slowing him down any. It just lets him communicate ideas and words before he is ready to pronounce them- like the word ORANGE - he knows it and can sign it, but he is a ways off from saying it. But because I know what he is looking at or wants, I can talk more about the orange train, or the orange light, etc. It seems to work for us.
On a slightly different note, we got the Naida processors- the behind the ear (BTE) CI from Advanced Bionics. They are small and sleek, though still bigger than the hearing aids were. I think they might be lighter, though. Peter sometimes REALLY likes wearing them, and other times not so much. If there is a risk of throwing (and since I don't have any wig tape yet, that is any time he is being a stinker) I just put the Neptunes back on. Or I have the Neptunes already in his pockets, and pop them on as soon as the Naidas are taken off/shaken off/rubbed off. I am hoping the better microphone placement and the multiple microphones in the Naidas make for better hearing and easier hearing. We will see.
Happy Holidays!
I have really wanted to update Peter's word list, and since we filled out The MacArthur-Bates Communicative Development Inventory for our IFSP meeting, it should be easy. But every time I turn around Peter is adding another word! Some in ASL, some spoken, some both! I am so pleased with his progress! And he is starting to put two words together!!! As I saw with my girls, and I predicted Peter would do the same, the phrases are one spoken and one signed word. "More" MUSIC, and "dada" WORK have come out so far, and I can't wait to find out what is next. Peter is really into colors, so I am curious to see if he will use them in a two-word phrase. I have noticed that Peter will start using a word in ASL, then shortly thereafter say it, or try to say it, so I have no problems with him using ASL, since I don't think it is slowing him down any. It just lets him communicate ideas and words before he is ready to pronounce them- like the word ORANGE - he knows it and can sign it, but he is a ways off from saying it. But because I know what he is looking at or wants, I can talk more about the orange train, or the orange light, etc. It seems to work for us.
On a slightly different note, we got the Naida processors- the behind the ear (BTE) CI from Advanced Bionics. They are small and sleek, though still bigger than the hearing aids were. I think they might be lighter, though. Peter sometimes REALLY likes wearing them, and other times not so much. If there is a risk of throwing (and since I don't have any wig tape yet, that is any time he is being a stinker) I just put the Neptunes back on. Or I have the Neptunes already in his pockets, and pop them on as soon as the Naidas are taken off/shaken off/rubbed off. I am hoping the better microphone placement and the multiple microphones in the Naidas make for better hearing and easier hearing. We will see.
Happy Holidays!
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 :)
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