I don't talk a whole lot about CJ's issues outside of his hearing loss. He does so incredibly well that I often just sort of push the other "stuff" aside to focus on the positive. He has so many amazing things going for him, and has come significantly further than anyone ever imagined he would.
He's preparing to get his left ear implanted, and part of that is getting some shots to prevent meningitis. His CT scan shows a lack of bone around the cochlea, which will cause a gusher of spinal fluid when the doctor goes in for the cochlear implant. The doctor is prepared for it, but the exposed fluid dramatically increases his risk of contracting the disease. In order to get the vaccine, he needed a well visit since it's been nearly two years since he last saw a doctor (which demonstrates just how healthy that kid is!!).
I really like our new doctor, and I felt like it was time to bring up some issues with her that we've seen in CJ. The issues I brought up were:
-unable to sleep through the night if he sleeps at all
-still wets the bed
-can't stay on task. Even sitting at the table to complete a meal is hard for him. Completing assignments at school is very trying for him.
-incredibly impulsive, sometimes putting himself in danger
-still sleeps in his closet frequently
-can't tie his shoes, zip his pants, or button his trousers
-can't ride a bike with training wheels
-unable to correctly form his letters when writing
-relates very well to adults, but struggles a bit in playing with his peers
-lots of avoidant behavior, especially with assignments or things that are hard
Many of these issues are things that an OT has been working on with him all year long. The behavioral issues are things that the schools and we have been working on literally since he was three years old. They're holding him back from feeling successful and making friends at school.
For the first time in his life, I finally agreed to allow him to try out some medication. I won't pretend to not be nervous about it because I am really unsure of what to expect. It's not something I have wanted to do, but I felt like it was time to put my own preferences aside for what we think (and so desperately hope) is best for CJ. We're trying it out, revisiting the doctor in a week, and going from there. It's not a standard ADD/ADHD medication because neither the doctor nor I think that's quite what he has. We're hoping it'll help him sleep more regularly, control his impulses a little bit, and focus on tasks better. For the bed wetting, we got another medicine for him.
The doctor has mentioned the same for Liam a few times, but I'm pretty adamantly against it for him right now. He's just so young, hasn't gotten a real communication method yet, and well...it just doesn't feel right. The truth is that so much of what I do in parenting is based on what "feels right". Some call it Mother's intuition. I like to think of it as allowing myself to allow God to guide me in the right choices.
So, that's the latest CJ update. We're one step closer to getting that ear implanted, and hopefully one step closer to helping him feel more successful and happy about school.
Tuesday, May 24, 2011
Sunday, May 8, 2011
Some Silly CJ Sayings
It goes without saying that CJ is completely nuts. I'd go so far as to say I think the kid is just a little bit off his rocker. Then again, so was Einstein. I can't complain much if I can compare my kid to Einstein, right? He may be Deaf, but I have reason to believe it's entirely possible that he's also a genius...or something. At any rate, he's had some crazy things to say lately. Some of them stem from his Deafness and the fact that he mishears things. A lot of it, though...well, that comes from the fact that he's off his rocker.
He's been taking dance classes with Kassidi's mom since January. I was completely shocked that he even wanted to do it. In fact, I'd only originally signed up Rachel but he begged to try, so I let him. He's been working hard and has practiced and practiced and practiced. After I put him to bed at night I hear the frequent "thunk!" coming from the ceiling above me that is also the floor of his room. That's where he practices all his moves including flips and head stands. After each thunk, I hear something to the affect of "Good job, CJ. Remember to keep your shoulders back" or "Way to go CJ. Class, did you all see how great CJ just did?" Yes, he is completely alone in his room, but apparently there is a very important dance practice happening in his mind. In the mornings over breakfast, he proudly tells me how hard he's been practicing (in case I didn't know already) and reminds me that his "recycle" is coming up soon. I try to convince him that it's actually called a recital and he happily nods his head and says "Yep. That's what I just said."
CJ has also taken quite a bit of interest in the piano keyboard Byron got for his birthday. He's just itching to learn to play it and any instrument he can get his hands on. I have a friend at church who has agreed to take him on as a student and teach him, which I happen to know he will LOVE. His school principal is also in a rock band that played at a school event Friday night. CJ was in awe of her and her band and was thrilled when it was over and the band members let him touch the instruments. He chattered away with them explaining that he is going to be a "musikan" when he grows up. We tried to correct him on the word and told him it's actually called a musician. His reply? You guessed it. "Yep. That's what I just said." Silly kid.
He's been taking dance classes with Kassidi's mom since January. I was completely shocked that he even wanted to do it. In fact, I'd only originally signed up Rachel but he begged to try, so I let him. He's been working hard and has practiced and practiced and practiced. After I put him to bed at night I hear the frequent "thunk!" coming from the ceiling above me that is also the floor of his room. That's where he practices all his moves including flips and head stands. After each thunk, I hear something to the affect of "Good job, CJ. Remember to keep your shoulders back" or "Way to go CJ. Class, did you all see how great CJ just did?" Yes, he is completely alone in his room, but apparently there is a very important dance practice happening in his mind. In the mornings over breakfast, he proudly tells me how hard he's been practicing (in case I didn't know already) and reminds me that his "recycle" is coming up soon. I try to convince him that it's actually called a recital and he happily nods his head and says "Yep. That's what I just said."
CJ has also taken quite a bit of interest in the piano keyboard Byron got for his birthday. He's just itching to learn to play it and any instrument he can get his hands on. I have a friend at church who has agreed to take him on as a student and teach him, which I happen to know he will LOVE. His school principal is also in a rock band that played at a school event Friday night. CJ was in awe of her and her band and was thrilled when it was over and the band members let him touch the instruments. He chattered away with them explaining that he is going to be a "musikan" when he grows up. We tried to correct him on the word and told him it's actually called a musician. His reply? You guessed it. "Yep. That's what I just said." Silly kid.
Thursday, May 5, 2011
The Good, The Bad, and The Downright Naughty
Liam has been making some really good progress lately. Overall, we’re pleased with him. Well, we’re mostly proud. I find myself having to overlook his poop art, constant need to be in the dishwasher, recurring urge to empty the dog dish all over the kitchen, and his questionable kitchen reorganizing skills. Oh! And I also have to ignore the fact that he insists on removing every stitch of clothing and roaming the house in the nude. Other than those few things, he’s doing pretty great.
Being the resident genius that I am, I have made a few interesting observations. First, I’ve noticed that he is definitely getting some benefit from his hearing aids. It’s clear that he is detecting sound and voice inflections. When he tries to imitate, though, his speech is muffled. I think he’s hearing things in a muffled way even with his hearing aids.
He has picked up the ability to sign really well. I usually only have to show him a sign for something one time and then he’s got it mastered. He also is always trying to vocalize when he speaks. The fact that he’s so dedicated, but still so muffled in his speech is what leads me to believe he’s hearing things funny. That may be all that will be needed to get him going on his cochlear implant. We shall see.
Liam is also developing a cute little sense of humor. Well, kind of cute but also kind of naughty. Mostly it’s just naughty. Let’s be honest here. He delights in walking up to Drezden casually and then taking the glasses right off his face while running and laughing maniacally. He also does this with CJ’s processor, tv remotes, sippy cups, and the occasional hotdog. He also thinks it’s completely hilarious to walk through the house and systematically dump things. Actually, the more I write this all out, the more I think he just has a lovely little naughty streak running through him rather than a sense of humor. And, since we’re talking about streaking, have I mentioned that he loves to be naked AND in the dishwasher at the same time? Oh. I did? Well, I’m mentioning it again, because it’s true. The little bugger is going to be the Grand Puba of some Deaf nudist colony someday.
So, those are my observations for today. Overall, things are going well. As we can all see, though, there is still plenty of room to make improvements.
Being the resident genius that I am, I have made a few interesting observations. First, I’ve noticed that he is definitely getting some benefit from his hearing aids. It’s clear that he is detecting sound and voice inflections. When he tries to imitate, though, his speech is muffled. I think he’s hearing things in a muffled way even with his hearing aids.
He has picked up the ability to sign really well. I usually only have to show him a sign for something one time and then he’s got it mastered. He also is always trying to vocalize when he speaks. The fact that he’s so dedicated, but still so muffled in his speech is what leads me to believe he’s hearing things funny. That may be all that will be needed to get him going on his cochlear implant. We shall see.
Liam is also developing a cute little sense of humor. Well, kind of cute but also kind of naughty. Mostly it’s just naughty. Let’s be honest here. He delights in walking up to Drezden casually and then taking the glasses right off his face while running and laughing maniacally. He also does this with CJ’s processor, tv remotes, sippy cups, and the occasional hotdog. He also thinks it’s completely hilarious to walk through the house and systematically dump things. Actually, the more I write this all out, the more I think he just has a lovely little naughty streak running through him rather than a sense of humor. And, since we’re talking about streaking, have I mentioned that he loves to be naked AND in the dishwasher at the same time? Oh. I did? Well, I’m mentioning it again, because it’s true. The little bugger is going to be the Grand Puba of some Deaf nudist colony someday.
So, those are my observations for today. Overall, things are going well. As we can all see, though, there is still plenty of room to make improvements.
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