Pic of Joshua the Cutie Pie

Cool! Even with my slow hard drive, I was able to figure out how to add a photo. It won't be as good as the first, but I wanted to show you a pic of Joshua since I've been talking about him so much. This photo was taken in June at one of the places he got therapy. Josh used to love to play with the set up they had in the waiting room. He'd pull a lever and figure out which part of the display would light up. This was where he had physical therapy, and where I first realized how much the PT and CI rehab really worked together. When Josh felt more comfortable with his physical abilities, he was finally able to better focus on his communication skills.

I hope this picture posts well. I'm finally setting up my home office and hope to have more pics to post in the near future. :)

Rebuilt by Michael Chorost.

Okay, I have the book and I'm finally going to start reading it. I have two CI boys, but I can't tell you what it means to me to talk with and read about adult CI users' experiences. They can put their experiences into better words than my boys can. This helps me to more clearly understand what they may be going through, what they could be feeling through this whole CI process. I've heard very good things about the book, Rebuilt, can't wait to dig into it.

Here's the info from the inside cover flaps:

"Michael Chorost became a cyborg on October 1, 2001 (oh my gosh, the same nickname we had for Matt, implanted almost the same time, too!), the day his new ear was booted up. Born hard of hearing in 1964, he went completely deaf in his thirties. Rather than live in silence, he chose to have a computer surgically embedded in his skull to artificially restore his hearing.

This is the story of Chorost's journey--from deafness to hearing, from human to cyborg--and how it transformed him. The melding of silicon and flesh has long been the stuff of science fiction. But as Chorost reveals in this witty, poignant, and illuminating memoir, fantasy is now giving way to reality.

Chorost found his new body mystifyingly mechanical: kitchen magnets stuck to his head and he could plug himself directly into a CD player. His hearing was routinely upgraded with new software. All this forced him to confront complex questions about humans in the machine age: When the senses become programmable, can we trust what they tell us about the world? Will cochlear implants destroy the signing deaf community? And above all, are cyborgs still human?"

And then about Chorost:

"Michael Chorost has a B.A. from Brown University and a Ph.D. from the University of Texas at Austin. He lives in San Francisco, where he writes about science and consults on educational computing."

It also states that the jacket image is a CAT scan of the author's head, showing his implanted CI. Very, very interesting!!!!! I can't wait until my Matt is old enough to read the book for himself. Someday...

Signs of progress.

Okay, I've told some folks that it really helps to keep a journal, to see how far your kids have really come with therapy, communication, speech, etc.

Sometimes I get so frustrated with Josh's "slow progress", that I loose sight of how much he's really done in the last year. Josh's CI was activated 5/04. At that time his balance was improving, but his muscle tone was weak and his motor planning skills were still developing. He didn't finally start walking until late that October, before he turned two in early December. He didn't start "meaningful vocalization" until the following February, I think. I knew he was recognizing sounds and words, but it was hard to show others when he didn't have the right ways to express what he understood.

Now were starting October again, and Josh is not only walking, he's running, jumping a bit, climbing up and down stairs better (when he's not too tired), and has just recently discovered his urge to climb. And he can vocalize on his own, unprompted. Appropriately. Different vowels for a word (ah ee for Daddy, Uh-oh), some consonants, and responds much, much better to what he hears, too. So he's made great progress, and I have to remember that.

Pretty cool. I don't know where he'd be without his CI right now. Or where I'd be without good guidance from all of the professionals we've met over the years. Or w/o the great support from friends, internet forums, etc. I'm just finally learning to be happy just where I am, plugging along with my boys. :)

Use what works.

When Josh gets bored, unfocused, he falls into his own little world. Especially when tired. That means it can take a lot of my attention at times to keep him motivated, learning. Some times I have to just step back and let him do "his thing". I try to keep him focused on playing with something, but sometimes I just need a break, too.

Some days Josh will follow me around the house and communicate GREAT! Other days, like today, all of us are tired and want to be left alone. But I'm still committed to doing some type of therapy with him. I have found that he absolutely LOVES the outdoors. Even on his worst days he'll communicate better, relax and use his voice if we're doing something outside. That might not be so practical in a school setting, but it works at home. And he seems to focus on certain things, like the moon, but he gets relaxed enough outside that I can acknowledge the moon and then get him talking about the trees. Really cool!

I don't know if you can tell, but today is one of those days I've had to step back from him a little, take a breather, then almost dig in the trenches with him again. He's not my only focus, I have two other little boys I put a great amount of effort into, and a husband who for some reason thinks I'm supposed to be cooking for him every night. I don't remember that in the wedding vows. Let's just say that lately I've been trying out a few pizzarias in our new town.

Okay, back to what works. Josh does best when well rested. Makes sense, right? Well, Matt does his best school work in the quiet of the end of the day. He's been doing "school books" since before he was three. I used to LOVE the products at: http://www.learningadventures.com/ . I've used them with both Matt and Chris, deaf and hearing alike. Very well put together material. To this day Matt loves doing his "school books". The school provides plenty of them now, ha ha! I haven't been at their web site for a while now, just saw they have packages for younger kids, may have to look into that for the boys again.

But I've had to learn to use what works with each of the boys. One likes books, the other will do better hands on, outside. Matt likes to read and work at the end of the day, I have to put time aside each morning to spend with Josh before he gets too tired. Matt is very oral, Josh seems to need more tactile/visual input right now. I can really push Matt, always could, I have to be a little more creative with Josh.

They pay me in hugs, double on the weekends, triple on holidays. :)

Mommy Thoughts, and "I love you." :)

Okay, I LOVE my boys. I'm working hard to do what's best for them. But sometimes they do drive me bonkers. I've been blessed with excellent hearing, but can't turn my volume or sensitivity down when their little voices are grating on my last nerve. BUT, I CAN USE EARPLUGS! Seriously. I have a blood pressure cuff to monitor my blood pressure, and I have actually noticed that when they boys are bugging me and I use the earplugs, my pressure actually stays lower! I can still hear the boys when they need something, and I keep a close eye on them at all times, but their cute little voices don't bother me as much when they're muffled by the plugs. Go figure. :)

While Josh's progress may be slow, it is a bonus to see him still progressing forward in his language development. He doesn't wear his CI to bed (Matt does at times), so I sign more with him then. Last night I signed "I love you." and he held his hand up and vocalized "I uh oo" back to me. Yeah! He is trying to use his voice much more now, and that's encouraging. Once he's more comfortable and consistent, I'll start picking on the more fine details.

Oh! And last night he was having a rough time so we took a little walk outside. We've been working on using two words together at a time, instead of just labeling things. So we had to say, "Night night tree." and "Bye bye light." at least 50 times each. But he was so excited! He would "Walk walk walk", spot another three and point to it and start squealing! And he spotted airplanes passing overhead and would point and vocalize bye bye. Pretty cool.

His language is coming along better now. He's understanding and identifying colors, red is his favorite. He is using two words together now, like "cat food/eat". He understands more words receptively, sentences, but I'm talking about him expressively, too.

Ooops, gotta go. Will finish later.

Joshua is two.

Sometimes I'm so focused on Josh and his therapy, receptive and expressive language development, speech progress, etc., that I forget he's also two years old. He is such a stubborn little boys sometimes! I am trying to keep him up today so he will go to sleep early tonight, and my cranky two year old isn't listening to me any more! I even checked to see if his CI was still turned on, working, volume and sensitivity in the right places. He just ignores me. I say the word "candy", and he turns around immediately, signs "candy" and vocalizes, "ah ee". Yes, little guy, you CAN hear me!!!!! Now you're just not LISTENING!

I find he LOVES doing therapy at home now, but I have to make sure I capitalize on his energy early in the day. And if I work with him early on, it follows through the entire day.

Routine: boys wake up, get them dressed, CIs on, fed, Matt off to school. Then some reading and therapy time with Josh and Chris (my helper). Then some free play while I suck down a cup of java (okay, for those of you who know me, I'm back on the bean. At least it's organic beans...). Then throughout the day I try to use ideas I've learned from the Learn to Talk Around the Clock seminar I went to. I really, really want to buy that program. Then Chris to school in the p.m. That's usually when I try to get Jsoh down for a nap. Then pick up Chris, then Matt comes home on the bus. I TRY to do some more therapy with all three of them after school. I kind of have to judge where they're at, how they're feeling and acting to figure out what we can do. If the three of them don't work out together, I just hang with Josh and do some concentrated "Talk Around the Clock" communication with him. Like prop him up on the stool and talk to him about cooking dinner, what I'm doing. Have him participate even if just stirring.

On Josh's school days it's pretty much the same, except when Matt leaves on the bus, I immediately take Chris and Josh to Josh's school. Chris is a hearing peer right now, doing very well, too! Then I have some Mommy time (BIG WHOO HOO!), pick up the kids and head home. Soon Josh will be bussed there five days a week, all day. I think he'll do very well. Two days a week with Chris there seems to be working out as a good transition. Josh hasn't fussed once, missing me.

Okay, Josh's playing on his own downstairs now. I need to go check on him. He absolutely LOVES playing with the trains down there. I want to paint the wall behind his train table like a scene from Thomas the Tank Engine. I could include pictures of some of his better vocalized words: moon, ball, cat, tree, etc. Tie them into the mural. :)

I'm so proud of Matt!

Matt won his "spelling bee" last week, and he has another today. Now that we're working on spelling, I'm finding which letters he really doesn't hear as well. When I see how he perceives certain words, it's like an "Ah ha!" moment to me. But then I'm also shocked at how far he's come, too.

Okay, why am I proud of Matt? The spelling bee, yes, but moreso because he has really adapted well here. He is just now seven, and this is his sixth school. Last night was the first meeting for Cub Scouts, and he's in a group with maybe 12 kids from his mainstream 2nd grade class. My husband said that when they were asked to pair off, three other kids were fighting to be Matt's partner! I think the school, teachers and families have really made a great effort to bring him into the community here, but I also think Matt is very well adjusted, has a great self image, too. And I think folks notice that. He has hurdles to overcome, but he works so hard with such a great attitude! Try and try again, he says. :)

Josh is doing well at school, too. He went through a very rough spell last weekend, but after the rain front moved through (remnant of Hurricane Rita), he woke up the next morning in the most chatty mood! Night and day difference, literally. I'll write more about that later, but I think, no, I really believe his vestibular system can get messed up with allergy problems, big pressure changes in the atmosphere, etc. I have no research on this, just two boys that I've watched through the years. I pointed this out to Matt's teachers early on. I don't think they believed me at first, either, but then they watched him and would be shocked. I have no problem admitting I'm a Bonkers Mommy, but I really keep good observations of the boys, too. Journaling here has helped me sort out some things, too.

Okay, back to Josh. I don't have the communication sheet in front of me, but I think the teacher said his is age appropriate in play, and was trying all day to imitate her communication. Yes, with sign right now, but they are strongly encouraging his speech, too. First, I think he just needs to get comfortable, get in a routine at the school. Then maybe work on the specifics of his speech? I need to read that sheet better. I like hearing how he's at least initiating conversatin now, too. I LOVE Josh's teacher! Just the little I've seen of her, she is amazing with the kids. Funny, but she was talking to Josh with the same voice, expressions as what might be used with the Learn to Talk Around the Clock materials. Really communicating with Josh on his level. She seems so patient, too. We are thankful to have such good schools for the boys.

I want to look into PROMPT therapy for Josh. I don't know if insurance will pay for it, and we're not in the public school program, either. But if it helps him, I'd have to find a way to pay out of pocket. I've heard some good anecdotal stories about it from other families, other children with apraxia. Can't hurt to at least have him looked at, see what a therapist might have to say.

Ugh. Have to clean the house. Believe it or not, Josh actually helps, and he's not even three yet. Yes, I train my boys young, with hopes they will still help me when they're older. :)