Not dead yet. Just busy with sick Rachael, ramping up ABA again and doing silly things like sleeping. I've started several posts and never finished them (hopefully this one will get completed!).
I guess that's all. I'll have time for deep thoughts... someday....
* I think it was The Search for the Holy Grail, when the guy calls out, "bring out your dead!"
.... I looked it up... and it is The Search for the Holy Grail....
Saturday, February 27, 2010
Monday, February 22, 2010
For Sale... ?
Yesterday, I walked through a big mall in Capital City (the city where I grew up) for the first time in forever. I had the girls with me, we were just killing time waiting for Daddy.
Now, maybe I'm just getting sheltered living in a small, comparatively conservative city these days. I have walked though the mall at home fairly recently, and don't remember being overwhelmingly shocked.
I was quite shocked walking through this particular mall. Some of the store fronts have very nice displays... one in particular had a nice assortment of bath and beauty products.
Most clothing stores, however, were horrifying. They were equally appalling for children, teens and adults. They screamed the same message, over and over.
"I am for sale"... as in, "My body is for sale".
I've noticed that it's getting harder and harder to buy clothing, even young children's clothing, that's modest. And by "modest", I mean no cleavage, no belly buttons, no bum cleavage, and something that hangs slightly from the body instead of being skin-tight. Not unreasonable, I would think?
But it's hard. I don't think anyone needs to see my three-year-old's "cleavage". Try buying a dress larger than a 3x that doesn't have a plunging neckline, spaghetti straps, or a tightly-fitted bodice. No small task, I tell you!
Lingerie for eight-year-olds? Why? We encourage our children to dress like they're going clubbing when they're in grades 1 and 2, and then we're shocked and surprised when they are sexually active at 14 or 15.
I often buy used and second-hand clothes for my kids, and gladly take hand-me-downs for the sake of economy. However, I find that I am increasingly purposely buying older-style clothing for my children because I have difficulty finding appropriate attire for them in the "new" clothing section.
I have been giving a lot of thought about modesty lately. What does that mean? I know several people... evangelical protestants, mostly... who only wear below-the-knee skirts because they feel that they are compelled to do so by the Bible (they generally site Deutoronomy and 1 Timothy). They have a two-fold concern: firstly, that women should dress differently from men. They feel that this means that women must wear skirts, always and never pants. I see many flaws with this argument, none of which I feel like I want to get into right now.
Secondly, and this one interests me, is that they feel that it's more modest for a woman to wear a long skirt. Certainly, there are immodest skirts out there... I saw several in that mall. But the idea of what constitutes modesty intrigues me. It's so... counter-cultural. We are not taught to be modest anymore. Do we even know what that means?
Do I know what that means?
More on this later.
Now, maybe I'm just getting sheltered living in a small, comparatively conservative city these days. I have walked though the mall at home fairly recently, and don't remember being overwhelmingly shocked.
I was quite shocked walking through this particular mall. Some of the store fronts have very nice displays... one in particular had a nice assortment of bath and beauty products.
Most clothing stores, however, were horrifying. They were equally appalling for children, teens and adults. They screamed the same message, over and over.
"I am for sale"... as in, "My body is for sale".
I've noticed that it's getting harder and harder to buy clothing, even young children's clothing, that's modest. And by "modest", I mean no cleavage, no belly buttons, no bum cleavage, and something that hangs slightly from the body instead of being skin-tight. Not unreasonable, I would think?
But it's hard. I don't think anyone needs to see my three-year-old's "cleavage". Try buying a dress larger than a 3x that doesn't have a plunging neckline, spaghetti straps, or a tightly-fitted bodice. No small task, I tell you!
Lingerie for eight-year-olds? Why? We encourage our children to dress like they're going clubbing when they're in grades 1 and 2, and then we're shocked and surprised when they are sexually active at 14 or 15.
I often buy used and second-hand clothes for my kids, and gladly take hand-me-downs for the sake of economy. However, I find that I am increasingly purposely buying older-style clothing for my children because I have difficulty finding appropriate attire for them in the "new" clothing section.
I have been giving a lot of thought about modesty lately. What does that mean? I know several people... evangelical protestants, mostly... who only wear below-the-knee skirts because they feel that they are compelled to do so by the Bible (they generally site Deutoronomy and 1 Timothy). They have a two-fold concern: firstly, that women should dress differently from men. They feel that this means that women must wear skirts, always and never pants. I see many flaws with this argument, none of which I feel like I want to get into right now.
Secondly, and this one interests me, is that they feel that it's more modest for a woman to wear a long skirt. Certainly, there are immodest skirts out there... I saw several in that mall. But the idea of what constitutes modesty intrigues me. It's so... counter-cultural. We are not taught to be modest anymore. Do we even know what that means?
Do I know what that means?
Wednesday, February 10, 2010
1-800-GYPSIES
It's one of those (weeks) days.
You know the one.
The one where you wonder if you're a bad parent for actually considering locking your firstborn in a closet (I promise it would be a big closet!)?
The one where you seriously consider following through on your threat to sell them to the gypsies.
You know, the one where it's too cold to play outside, the baby won't (can't) nap, and you didn't have nearly enough sleep last night? And you'll get no relief tonight because your husband has a KofC meeting after supper? Your only saving grace is that you're having leftovers for supper, so you don't have to cook and dishes are minimal?
Where your prayer candle is lit not for Haiti, but for your own children and your sanity?
Where you don't even get to finish counting to ten when you need to intervene... again... ?
(... where did I put that phone number for the gypsies...?)
You know the one.
The one where you wonder if you're a bad parent for actually considering locking your firstborn in a closet (I promise it would be a big closet!)?
The one where you seriously consider following through on your threat to sell them to the gypsies.
You know, the one where it's too cold to play outside, the baby won't (can't) nap, and you didn't have nearly enough sleep last night? And you'll get no relief tonight because your husband has a KofC meeting after supper? Your only saving grace is that you're having leftovers for supper, so you don't have to cook and dishes are minimal?
Where your prayer candle is lit not for Haiti, but for your own children and your sanity?
Where you don't even get to finish counting to ten when you need to intervene... again... ?
(... where did I put that phone number for the gypsies...?)
Thursday, February 4, 2010
Victory is Ours!
Success!!!
After many months of waiting, we will finally have a full complement of ABA staff!! Hooray!
AND....
::gasp:: you mean there's more????
Why yes, young grasshopper, there is more!
We got a call today from a speech language pathologist! Who has an opening! Who now has Abby as part of her case load!!
And that's not even the best part!
::eyes wide open:: it's not?
No, the best part is....
She comes to the house!
I don't have to shlep kiddo down to the hospital for Speech! Plus, no finding child care for Rachael!
::happy dance::
After many months of waiting, we will finally have a full complement of ABA staff!! Hooray!
AND....
::gasp:: you mean there's more????
Why yes, young grasshopper, there is more!
We got a call today from a speech language pathologist! Who has an opening! Who now has Abby as part of her case load!!
And that's not even the best part!
::eyes wide open:: it's not?
No, the best part is....
She comes to the house!
I don't have to shlep kiddo down to the hospital for Speech! Plus, no finding child care for Rachael!
::happy dance::
Tuesday, January 19, 2010
The Great Cottage Cheese Incident
This actually happened a week or two ago. It's the reason why we now have a lock on our fridge.
Abby, bless her heart, helped herself to the 500 ml just-opened container of cottage cheese (that's about a pint for all you non-metric people). She then proceeded to take the said container of cottage cheese into the living room, dump the contents on the carpet, and stomp (!) on it a la I Love Lucy.
Needless to say, it was a mess.
I have several new grey hairs.
On the positive side, we've discovered a previous owner of this house must of scotch-guarded the carpets. Bless them.
Abby, bless her heart, helped herself to the 500 ml just-opened container of cottage cheese (that's about a pint for all you non-metric people). She then proceeded to take the said container of cottage cheese into the living room, dump the contents on the carpet, and stomp (!) on it a la I Love Lucy.
Needless to say, it was a mess.
I have several new grey hairs.
On the positive side, we've discovered a previous owner of this house must of scotch-guarded the carpets. Bless them.
Monday, January 18, 2010
A Begining
If you're reading this, maybe you've been to my other blog, All Our Needs Are Special. I created this blog, A Prairie Catholic, because I find my musing increasingly revolve around my faith. I wanted a place where I can examine them.
And so it begins.
And so it begins.
Friday, January 15, 2010
Randomings and the Epilepsy Rant
I've been meaning to post for awhile. Never seem to get around to it. So I'm taking five and catching up.
I unplugged from Facebook. It's scary. I feel adrift, but noticed that I have considerably more time on my hands.
I've gone back to piano. What does that mean, you ask? Many moons ago, I stopped my studies to get my ARCT in piano pedagogy. After many months (years) of musings, and the need to so something totally unrelated to the world of Autism and Infantile Spasms, I've decided (with my husband's blessings and support, of course) to complete my education. Cool eh? I feel very suave and sophisticated telling people that I'm now studying with a Russian-trained piano instructor at the University. :)
Speaking of Autism, very good news! They finally hired a second tutor to replace our girl that left in November! The new girl starts in two Mondays from now. We're all very excited.
Abby is doing well/not well. She's finally over her sinus/ear infection that took two rounds of antibiotics to clear up (that's the "doing well" part). She's still having seizures (the "not well" part). Several times a day. I'm feeling a certain level of frustration because they don't seem to be doing anything...
They've increased her VPA from 200 mg BID (daily total 400 mg) to 200 mg BID then 300 mg OD (daily total 700 mg). She's at almost 100% increase, but we see no improvements. I still haven't actually talked to the neurologist, just the nurse-clinicians. They've mentioned maybe having us make the trip in to see them, but won't give me a date. I asked when do we stop just increasing a single medication that doesn't seem to be doing very much, and when do we try something else. Their answer is that she still has "room to increase" based on her weight and trough levels (last at 73, should be between 50 and 100), so they'll just carry on for awhile yet.
No EEG has been done to see what's up, and no other tests have been done except the trough levels, ALT for liver functions and CBCs. I'm getting antsy. I want to know if the seizures are coming from the same place as before. Do they have the same profile? We should be outgrown the Infantile Spasms, so now what the hell is this? She's definately having complex partials, but I couldn't tell you how many. At least three a day, although I suspecct more because I can't keep my eyes on her every waking second as much as a try.
I lay in bed at night, trying to visualize a path for us. It's very blank. I feel like we're at a dead end, and uncharted waters. I realize now that we will probably always have seasons in her life where we will be struggling with this disorder, but it's been a long time since I've really understood what that means.
I read a great post last night. It's a blog I've followed for a long, long time, another child affected by IS. She talks about IS being a symptom, not the disease. I had thoughts like that before, but was never able to articulate it. I envy her, because for all of their struggles, they finally had an answer. We've never gotten answers, and because Abby did so well for 19 months, we weren't overly concerned about that. We had hoped that part of our life was over with. But now, suddenly, the need for answers is very real and very urgent to me.
Bah, enough already. Onward with my day to be productive! Or at least a reasonable facsimilie thereof.
I unplugged from Facebook. It's scary. I feel adrift, but noticed that I have considerably more time on my hands.
I've gone back to piano. What does that mean, you ask? Many moons ago, I stopped my studies to get my ARCT in piano pedagogy. After many months (years) of musings, and the need to so something totally unrelated to the world of Autism and Infantile Spasms, I've decided (with my husband's blessings and support, of course) to complete my education. Cool eh? I feel very suave and sophisticated telling people that I'm now studying with a Russian-trained piano instructor at the University. :)
Speaking of Autism, very good news! They finally hired a second tutor to replace our girl that left in November! The new girl starts in two Mondays from now. We're all very excited.
Abby is doing well/not well. She's finally over her sinus/ear infection that took two rounds of antibiotics to clear up (that's the "doing well" part). She's still having seizures (the "not well" part). Several times a day. I'm feeling a certain level of frustration because they don't seem to be doing anything...
They've increased her VPA from 200 mg BID (daily total 400 mg) to 200 mg BID then 300 mg OD (daily total 700 mg). She's at almost 100% increase, but we see no improvements. I still haven't actually talked to the neurologist, just the nurse-clinicians. They've mentioned maybe having us make the trip in to see them, but won't give me a date. I asked when do we stop just increasing a single medication that doesn't seem to be doing very much, and when do we try something else. Their answer is that she still has "room to increase" based on her weight and trough levels (last at 73, should be between 50 and 100), so they'll just carry on for awhile yet.
No EEG has been done to see what's up, and no other tests have been done except the trough levels, ALT for liver functions and CBCs. I'm getting antsy. I want to know if the seizures are coming from the same place as before. Do they have the same profile? We should be outgrown the Infantile Spasms, so now what the hell is this? She's definately having complex partials, but I couldn't tell you how many. At least three a day, although I suspecct more because I can't keep my eyes on her every waking second as much as a try.
I lay in bed at night, trying to visualize a path for us. It's very blank. I feel like we're at a dead end, and uncharted waters. I realize now that we will probably always have seasons in her life where we will be struggling with this disorder, but it's been a long time since I've really understood what that means.
I read a great post last night. It's a blog I've followed for a long, long time, another child affected by IS. She talks about IS being a symptom, not the disease. I had thoughts like that before, but was never able to articulate it. I envy her, because for all of their struggles, they finally had an answer. We've never gotten answers, and because Abby did so well for 19 months, we weren't overly concerned about that. We had hoped that part of our life was over with. But now, suddenly, the need for answers is very real and very urgent to me.
Bah, enough already. Onward with my day to be productive! Or at least a reasonable facsimilie thereof.
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