Most of the time I really am just fine with the fact that my children have special needs. In fact, I usually embrace it. Every now and then, though, something will happen that forces me to look at the reality of the situation. It's in those times that I feel like I take a little baby step back. While I certainly don't find myself wallowing in self pity or sobbing into my pillow, I do find myself sighing a little more heavily.
After Rachel's visit with Dr. C. on Wednesday, I spoke to Sara (deaf ed. teacher) and gave her the updates. We didn't really learn anything new other than the fact that she has very thin ear drums and that the plan is to hope her ears stay the way they are rather than to get worse. I let her know that Dr. C. didn't seem overly concerned by the amount she was missing and that maybe we didn't have to do very much in the way of an IEP or interventions for her. Her response was my first reality check for the week. She reminded me that Val (audiologist) is a little concerned about the level of Rachel's loss, and that Rachel will really struggle in Kindergarten if we don't do something to help her. It's not like she's going to need a ton, but the teacher will be wearing an FM and a sound field speaker will be placed in the classroom.
Rachel is so well-adjusted and "normal" that it's been easy to pretend that she really doesn't have a hearing loss. She plays like other kids her age, has friends her own age, didn't have any developmental delays, and has pretty good speech. Plus, she's my girl. We had always thought the CJ and Liam had a genetic thing that only applied to boys. Now we know that can't really be true. It's a little bit of a blow.
Then there's Liam. He's so happy. I mean, he's naughty, mischievous, into everything, and busier than a one legged man in a butt kicking contest, but he is just so happy. And smart. He is so very smart. Yes, he's behind his peers, but I guess sometimes I allow myself to pretend that that's just Liam and he's really fine. And the truth is that he is fine. But, he's also Deaf. And he has some health issues.
After parent ed. today, Betsy handed me his most recent audiograms. I've looked at them before, but today they really struck me. I compared them to the banana audiogram and really saw just how much he doesn't hear. It's a lot. He barely hears the lawn mower, doesn't hear the piano being played, and is nowhere near hearing any parts of speech. I mean, he can hear those things we believe with his hearing aids in, but...well, he's just very Deaf.
So, this week I was given a little bit of a reality check. It wasn't anything I didn't already know on paper. Still, today reality bites. Thank goodness there is always tomorrow.
Friday, April 15, 2011
Decisions, Decisions, Decisions
Liam and Rachel visited with Dr. C. on Wednesday. Overall, it was a really good visit, and I have no complaints. In fact, I'm really pleased with the plans we've made...I think.
Rachel: From the looks of things, she has unusually thin ear drums. This would normally be rather surprising to me, but I've learned to stop be surprised by anything. Unusually thin ear drums you say? Ok, let me just add that to the list of unusually unusual things about my children. Really, there isn't anything that can be done about it, so he's wanting us to just sit tight and monitor her hearing closely.
I spoke with Sara (deaf ed.teacher for the school district), and she wants to go ahead and order Rachel an FM system with a sound field speaker for Kindergarten. Basically, it'll just turn things up a bit for her and help the teacher sound louder than all the other noise that happens in a Kindergarten classroom.
She just finished her testing with the school district, so now we just have to wait for results. I'm pretty sure they tested her for speech and cognition. I don't have a whole lot of concerns about her cognition, but she does have some interesting speech sometimes.
Liam: This little dude is doing GREAT! Dr. C. asked about his progress, and I was really excited to be able to report that he's finally imitating tons of sounds and words. I'm pretty sure the kid would be a millionaire if money could be earned for making farm animal sounds.
As much as he's making strides, we know it's almost time to move forward with his cochlear implant. It sounds like the plan is to put it in his left ear. All we have to do is wait for Val (audiologist at Liam's school) to say go. My understanding is that she just needs to test one more ear, and then the ball will be rolling on that.
CJ: CJ wasn't with us, but Dr. C. and I discussed him. CJ has decided that he absolutely wants to implant his left ear. I think he's finally old enough to recognize the difference between his aided ear and his implanted ear. I've told him it's going to hurt, and he is undeterred. He insists that he'll give up anything and everything to get that ear implanted. How can I say no to that?
Deciding to implant CJ's aided ear was a really hard choice for us. What if it doesn't work as well as the first? What if he's unhappy with it? What if? What if? What if? In the end, it comes down to the fact my fears can't be the driving force behind my decision making. It needs to be about what's best for my children. He wants this. He can articulate that he wants this. His whole heart and soul wants this. So, this is what he'll get.
*Sigh*. I just hope it's the right decision...
Rachel: From the looks of things, she has unusually thin ear drums. This would normally be rather surprising to me, but I've learned to stop be surprised by anything. Unusually thin ear drums you say? Ok, let me just add that to the list of unusually unusual things about my children. Really, there isn't anything that can be done about it, so he's wanting us to just sit tight and monitor her hearing closely.
I spoke with Sara (deaf ed.teacher for the school district), and she wants to go ahead and order Rachel an FM system with a sound field speaker for Kindergarten. Basically, it'll just turn things up a bit for her and help the teacher sound louder than all the other noise that happens in a Kindergarten classroom.
She just finished her testing with the school district, so now we just have to wait for results. I'm pretty sure they tested her for speech and cognition. I don't have a whole lot of concerns about her cognition, but she does have some interesting speech sometimes.
Liam: This little dude is doing GREAT! Dr. C. asked about his progress, and I was really excited to be able to report that he's finally imitating tons of sounds and words. I'm pretty sure the kid would be a millionaire if money could be earned for making farm animal sounds.
As much as he's making strides, we know it's almost time to move forward with his cochlear implant. It sounds like the plan is to put it in his left ear. All we have to do is wait for Val (audiologist at Liam's school) to say go. My understanding is that she just needs to test one more ear, and then the ball will be rolling on that.
CJ: CJ wasn't with us, but Dr. C. and I discussed him. CJ has decided that he absolutely wants to implant his left ear. I think he's finally old enough to recognize the difference between his aided ear and his implanted ear. I've told him it's going to hurt, and he is undeterred. He insists that he'll give up anything and everything to get that ear implanted. How can I say no to that?
Deciding to implant CJ's aided ear was a really hard choice for us. What if it doesn't work as well as the first? What if he's unhappy with it? What if? What if? What if? In the end, it comes down to the fact my fears can't be the driving force behind my decision making. It needs to be about what's best for my children. He wants this. He can articulate that he wants this. His whole heart and soul wants this. So, this is what he'll get.
*Sigh*. I just hope it's the right decision...
Wednesday, April 6, 2011
The Perfect Gift
CJ and Liam share a Deaf Ed. teacher, Ms. Sarah. She sees CJ in school and then sees Liam at home. CJ also has an interpretor that works with him twice a week to teach him sign language which he LOVES. She has even helped form a "class club" to help CJ teach his peers to sign with him. It has done wonders for him, and he's so delighted with it.
Yesterday, Sarah came to see Liam but had a form with her for CJ. She handed it to me and said "CJ's interpretor is sponsoring CJ to go to this camp. It's a fantasy baseball camp for Deaf and Hard of Hearing kids." I was stunned! I looked over the paper and realized it meant he'd be learning a sport, getting to play with a variety of famous ball players, and spending a full week surrounded by kids just like him. He even gets a full uniform to wear each day!
I filled out the paperwork and went ahead and signed him up for the extended days that will allow him to stay and swim or learn to play hockey. With the help of the interpretor sponsoring him, we could afford the extra time.
CJ is beside himself with excitement. The camp is, of course, a few months away and he is already counting the days and planning what to wear and what he is going to do and who he thinks he'll meet. Rumor has it his interpretor will be there and his now famous friend, David. For CJ, it truly is the perfect gift!
For all the struggles we've had, the blessings have been easily ten times as prevalent. Every single time I start to feel like we're missing out on something or some completely unfortunate situation arises, God reminds me that He is there, that He knows who I am, and that He is caring for and loving my children through it all.
Yesterday, Sarah came to see Liam but had a form with her for CJ. She handed it to me and said "CJ's interpretor is sponsoring CJ to go to this camp. It's a fantasy baseball camp for Deaf and Hard of Hearing kids." I was stunned! I looked over the paper and realized it meant he'd be learning a sport, getting to play with a variety of famous ball players, and spending a full week surrounded by kids just like him. He even gets a full uniform to wear each day!
I filled out the paperwork and went ahead and signed him up for the extended days that will allow him to stay and swim or learn to play hockey. With the help of the interpretor sponsoring him, we could afford the extra time.
CJ is beside himself with excitement. The camp is, of course, a few months away and he is already counting the days and planning what to wear and what he is going to do and who he thinks he'll meet. Rumor has it his interpretor will be there and his now famous friend, David. For CJ, it truly is the perfect gift!
For all the struggles we've had, the blessings have been easily ten times as prevalent. Every single time I start to feel like we're missing out on something or some completely unfortunate situation arises, God reminds me that He is there, that He knows who I am, and that He is caring for and loving my children through it all.
Monday, April 4, 2011
"Flower"
Every Monday night, we have Family Night in our house. It's usually completely chaotic and ends in something being spilled, someone needing a band-aid, and everyone giggling...at least a little bit. We try to make sure everyone has a role to play in the night, whether it be saying an opening prayer, sharing acts of kindness they'd seen over the week, being in charge of snack or the activity, or writing down all of the week's events. Usually, I'd say it goes over Liam's head, but he seems really pleased with the fact that we're all together working on something.
On Saturday, Aiden went with his friend to an outdoor event teaching about nature preservation and the wetlands. In addition to a tick he brought home in his hair (gotta' love a free souvenir, right?), he also brought home a tree seedling. He can tell you all about the thing, but I can't remember for the life of me. With my luck, it's a sequoia tree and will take over the yard in just a few months or something. We decided that we would plant the tree tonight as a family.
We collected the tools we'd need, reigned everyone in to circle around the chosen spot, and started digging. Everyone got a turn to dig. CJ spent most of his time throwing things at people or turning hoses on, but everyone else stayed pretty much on task. Liam stood by and watched patiently and then was delighted when it was his turn to throw a few shovel's full of soil into the hole with the seedling. Aiden was pretty pleased that he got to throw some dog poop in as fertilizer. It was Molly's poop, so we figured that was her little way of contributing to our tree.
On the way back in, Liam took particular interest in the tulips and daffodils which are in full bloom along the front walkway. He'd touch each one, and then jump back a little at the way it felt on his little hands. Then, he'd reach over and touch it again with a bit more confidence. Each time, he'd look to me to tell him what it was. Since he pulled the tubing out of both earmolds, he was stuck depending on sign language. I showed him the sign for flower, and he was so proud. Within seconds he'd figured it out. He would carefully stroke each flower and then look up at me with a huge grin while he signed "flower".
It's funny how such a simple thing can have such a profound impact, isn't it? As happy as he was to touch and feel the flowers, I think he got more joy from the fact that he could communicate it to me. The pride in his eyes as he "told" me what each one was was certainly worth the time we'd spent stopping to smell...er, I mean touch, the flowers.
On Saturday, Aiden went with his friend to an outdoor event teaching about nature preservation and the wetlands. In addition to a tick he brought home in his hair (gotta' love a free souvenir, right?), he also brought home a tree seedling. He can tell you all about the thing, but I can't remember for the life of me. With my luck, it's a sequoia tree and will take over the yard in just a few months or something. We decided that we would plant the tree tonight as a family.
We collected the tools we'd need, reigned everyone in to circle around the chosen spot, and started digging. Everyone got a turn to dig. CJ spent most of his time throwing things at people or turning hoses on, but everyone else stayed pretty much on task. Liam stood by and watched patiently and then was delighted when it was his turn to throw a few shovel's full of soil into the hole with the seedling. Aiden was pretty pleased that he got to throw some dog poop in as fertilizer. It was Molly's poop, so we figured that was her little way of contributing to our tree.
On the way back in, Liam took particular interest in the tulips and daffodils which are in full bloom along the front walkway. He'd touch each one, and then jump back a little at the way it felt on his little hands. Then, he'd reach over and touch it again with a bit more confidence. Each time, he'd look to me to tell him what it was. Since he pulled the tubing out of both earmolds, he was stuck depending on sign language. I showed him the sign for flower, and he was so proud. Within seconds he'd figured it out. He would carefully stroke each flower and then look up at me with a huge grin while he signed "flower".
It's funny how such a simple thing can have such a profound impact, isn't it? As happy as he was to touch and feel the flowers, I think he got more joy from the fact that he could communicate it to me. The pride in his eyes as he "told" me what each one was was certainly worth the time we'd spent stopping to smell...er, I mean touch, the flowers.
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