Sunday, February 7, 2010
Saturday, February 6, 2010
What a Week
When I woke up this morning, I was feeling really . . . off. My throat was scratchy, which is no big deal, but I had no energy. I felt like I hadn't slept all week. Robert is such a saint, he let me take a nap all afternoon, and while I am no longer tired enough to sleep, I still feel really drained. Honestly, I think if I had a good cry, some of my energy might be restored, but I was sitting here trying to figure out WHY I feel so rotten, and it occurs to me this week was probably one of the most emotionally draining weeks I've had since Gabe's last serious illness. The obvious event was the surgery of my friend's son, Teddy - the one for whom I dyed my hair blue. The surgery was on Wednesday, and I spent the day at the hospital with my friend's family until he was in recovery and they could go be with him. It was a pretty tense day, waiting while an eight year old boy we all loved had his brain exposed so the surgeon could remove a tumor that we smack in the center. At the end of the day though, Teddy proved what an amazing kid he is, and he proved the power of prayer a hundred fold. The surgery went smoothly, they were able to remove the entire tumor and it looks to be benign. That night I really felt like crying, but never did, so I guess I've been carrying that around all week.
What Teddy' surgery did for me, however, was re-align my perspective a bit. I like to think that the experiences we've had on this parenting journey with kids who aren't typical has given us a pretty decent perspective on life - an appreciation for the important things, the ability to recognize the big stuff from the little stuff, and that 99% of it is little stuff.
But sometimes I lose my way, and get off track. I've been wasting a lot of time lately worrying about the fact that my house is always disorganized, and that I can't keep up with anything, and I've been spinning my wheels trying to fix that instead of spending more quality time with the kids. At the same time, the fact that all three of our kids can now be described as "not typical" has come into sharp relief.
For Nick, those little quirks and idiosyncrasies of Aspergers seem to have graduated from minor annoyances to hindrances and problems. I think we are at the beginning of what is going to be a far more challenging period for Nick, and I have to say, I'm not sure I'm up to the task. I am truly feeling wholly inadequate to guide him through what's coming, and I'm desperately afraid he won't make it through without some collateral damage. It doesn't help that I feel like I'm flying blind. Aspergers is such a great unknown to me, and it is such a wide net, that I don't even know which way to go. I think we are lucky that Nick seems to be one of the milder cases - he's been able to function in school and do well, even if he hasn't been able to make friends. But right now, that doesn't make it any easier. In many ways, dealing with Down Syndrome is sooo much easier. I have a whole support group, and there is so much more concrete information about DS. There is at least a kind of road map we can follow. With Aspergers, I feel like I'm in the middle of nowhere without a GPS to guide me.
Also this week, we finally had the speech eval on Elijah. It went exactly as I expected. For a four year old, he doesn't have the articulation he should, and his deficits are enough to qualify him for speech services through the school. It's not news to us. We expected this outcome, and honestly, it really isn't worrisome to me. Speech articulation is a whole lot easier to deal with than either Aspergers or Down Syndrome. Even with his deficits, Elijah already speaks much better than Gabe, so it's really small potatoes, in the grand scheme of things.
But then it hits me, the very real possibility of having three kids all with IEPs. I'm an old pro at it, but still. Three kids on IEPs. I hate having to deal with just one. The thought of three is overwhelming to me right now. I know, on an intellectual level, this is nothing. My kids need some support and I *know* how to get it for them, and how to work with them. This week, my friend had to deal with the terror of having a child with a brain tumor. I can't even imagine what this week has been like for her, and I feel a bit guilty that I am even the slightest bit upset over my kids - my funny, energetic, loving, HEALTHY kids. Teddy is helping me keep it in perspective. We are all healthy and together and that's the only thing that matters. All that other stuff is small potatoes. It's just that sometimes, too many small potatoes make me feel like . . . how I'm feeling today.
What Teddy' surgery did for me, however, was re-align my perspective a bit. I like to think that the experiences we've had on this parenting journey with kids who aren't typical has given us a pretty decent perspective on life - an appreciation for the important things, the ability to recognize the big stuff from the little stuff, and that 99% of it is little stuff.
But sometimes I lose my way, and get off track. I've been wasting a lot of time lately worrying about the fact that my house is always disorganized, and that I can't keep up with anything, and I've been spinning my wheels trying to fix that instead of spending more quality time with the kids. At the same time, the fact that all three of our kids can now be described as "not typical" has come into sharp relief.
For Nick, those little quirks and idiosyncrasies of Aspergers seem to have graduated from minor annoyances to hindrances and problems. I think we are at the beginning of what is going to be a far more challenging period for Nick, and I have to say, I'm not sure I'm up to the task. I am truly feeling wholly inadequate to guide him through what's coming, and I'm desperately afraid he won't make it through without some collateral damage. It doesn't help that I feel like I'm flying blind. Aspergers is such a great unknown to me, and it is such a wide net, that I don't even know which way to go. I think we are lucky that Nick seems to be one of the milder cases - he's been able to function in school and do well, even if he hasn't been able to make friends. But right now, that doesn't make it any easier. In many ways, dealing with Down Syndrome is sooo much easier. I have a whole support group, and there is so much more concrete information about DS. There is at least a kind of road map we can follow. With Aspergers, I feel like I'm in the middle of nowhere without a GPS to guide me.
Also this week, we finally had the speech eval on Elijah. It went exactly as I expected. For a four year old, he doesn't have the articulation he should, and his deficits are enough to qualify him for speech services through the school. It's not news to us. We expected this outcome, and honestly, it really isn't worrisome to me. Speech articulation is a whole lot easier to deal with than either Aspergers or Down Syndrome. Even with his deficits, Elijah already speaks much better than Gabe, so it's really small potatoes, in the grand scheme of things.
But then it hits me, the very real possibility of having three kids all with IEPs. I'm an old pro at it, but still. Three kids on IEPs. I hate having to deal with just one. The thought of three is overwhelming to me right now. I know, on an intellectual level, this is nothing. My kids need some support and I *know* how to get it for them, and how to work with them. This week, my friend had to deal with the terror of having a child with a brain tumor. I can't even imagine what this week has been like for her, and I feel a bit guilty that I am even the slightest bit upset over my kids - my funny, energetic, loving, HEALTHY kids. Teddy is helping me keep it in perspective. We are all healthy and together and that's the only thing that matters. All that other stuff is small potatoes. It's just that sometimes, too many small potatoes make me feel like . . . how I'm feeling today.
At Least She Is Predictable
Following my previous post (which apparently reveals me to be an angry bitter person. That should come as a shock to my friends.) Sarah Palin did me the favor of proving me right. Her outrage over the use of the R-word, as it turns out, is nothing more than a political tool.
Before I explain further, I do wish to retract something I said. I said I think Rahm Emanuel should be fired. I take that back. Rahm Emanual, whatever other flaws he may have, handled the criticism like a grown up. He apologize and he signed a pledge to eradicate that word from his vocabulary. I appreciate that.
As it turns out, other far more vocal people have thrown the R-word out there, most recently Rush Limbaugh, and Sarah Palin didn't have much to say about that. Everyone's favorite psycho talk show host, Glenn Beck has used the term repeatedly on air, and Sarah Palin has remained silent. When confronted with Rush's transgression, Sarah's spokesperson issued a watered down generic statement about how it's not nice for anyone to call names, and then she later walked it back by clarifying that she was not talking about Rush in particular.
So, let's review. A democratic member of the President's staff issues the word in a closed door meeting amongst a small group of people, and Sarah Palin composes a lengthy diatribe on her facebook page about his lack of decency and demanding that the President fire him. Rush Limbaugh and Glenn Beck repeatedly use the term on public airwaves where they are heard by huge numbers of people, and that gets . . . nothing. The Democrat apologized and signed a pledge. Sarah thinks he should be fired. The Republicans have offered no sign of concern or recompense. Sarah remains silent.
Sarah Palin is as transparent as she is shallow. She has no convictions. She can't be bothered to defend her son, unless it is politically advantagous for her to do so. She truly is shameless. Trig deserves better and so does our country.
Before I explain further, I do wish to retract something I said. I said I think Rahm Emanuel should be fired. I take that back. Rahm Emanual, whatever other flaws he may have, handled the criticism like a grown up. He apologize and he signed a pledge to eradicate that word from his vocabulary. I appreciate that.
As it turns out, other far more vocal people have thrown the R-word out there, most recently Rush Limbaugh, and Sarah Palin didn't have much to say about that. Everyone's favorite psycho talk show host, Glenn Beck has used the term repeatedly on air, and Sarah Palin has remained silent. When confronted with Rush's transgression, Sarah's spokesperson issued a watered down generic statement about how it's not nice for anyone to call names, and then she later walked it back by clarifying that she was not talking about Rush in particular.
So, let's review. A democratic member of the President's staff issues the word in a closed door meeting amongst a small group of people, and Sarah Palin composes a lengthy diatribe on her facebook page about his lack of decency and demanding that the President fire him. Rush Limbaugh and Glenn Beck repeatedly use the term on public airwaves where they are heard by huge numbers of people, and that gets . . . nothing. The Democrat apologized and signed a pledge. Sarah thinks he should be fired. The Republicans have offered no sign of concern or recompense. Sarah remains silent.
Sarah Palin is as transparent as she is shallow. She has no convictions. She can't be bothered to defend her son, unless it is politically advantagous for her to do so. She truly is shameless. Trig deserves better and so does our country.
Wednesday, February 3, 2010
Sarah Palin Sure Loves to Talk
Her latest diatribe is against Rahm Emanuel, for his ignorant use of the R-word. Let's be clear, Rahm Emanuel is an ass. I hope he gets fired. He deserves every ounce of criticism he gets.
But not from Sarah Palin. Sarah Palin is the biggest of hypocrites, and her feigned outrage is completely hollow. She will jump on the bandwagon to criticize someone for the use of a word, and she'll trot her poor son Trig out, when it suits her, to promote her own self. But what, exactly has she done for the DS community, other than give birth to another member? Nothing.
Has she sponsored or fought for any legislation? No. Although, I guess that's hard to do when you quit your job halfway through. Has she fought to increase funding for research or programs? No. Has she participated in any of the nationwide Buddy Walks to raise awareness? No. Has she come to any conferences and given a speech? No. I was at the last NDSC Conference, and she was nowhere to be seen. One would think, given her state of voluntary unemployment, she might have the time to squeeze in an appearance or two to help promote awareness, research and programs. She seems to have enough time to speak to foreign audiences about what she perceives as failures in this President, and she seems to have enough time to speak at "Tea Parties." She has enough time to pontificate on the evils of providing healthcare to everyone, conveniently using Trig as a tool to manipulate opinion. Heck, she's been able to squeeze in writing a book (I use the term "writing" loosely) and promote it at book signings all over the country.
Here's a novel idea Ms.Palin. You want those of us in the DS community to take you seriously, perhaps you should consider engaging, instead of using your son's diagnosis as a convenient prop in your endless quest of self-promotion. You're mighty good at talking the talk. Why don't you wipe off some of that lipstick and walk the walk. I, for one, am not holding my breath. Given that you willingly put his life at risk to go make a speech, I personally don't think you hold your son in as high regard as the rest of us. It's a damn shame, really. Trig has such great potential, if he only had a mother who was interested in being his advocate, even when it's not to her benefit.
But not from Sarah Palin. Sarah Palin is the biggest of hypocrites, and her feigned outrage is completely hollow. She will jump on the bandwagon to criticize someone for the use of a word, and she'll trot her poor son Trig out, when it suits her, to promote her own self. But what, exactly has she done for the DS community, other than give birth to another member? Nothing.
Has she sponsored or fought for any legislation? No. Although, I guess that's hard to do when you quit your job halfway through. Has she fought to increase funding for research or programs? No. Has she participated in any of the nationwide Buddy Walks to raise awareness? No. Has she come to any conferences and given a speech? No. I was at the last NDSC Conference, and she was nowhere to be seen. One would think, given her state of voluntary unemployment, she might have the time to squeeze in an appearance or two to help promote awareness, research and programs. She seems to have enough time to speak to foreign audiences about what she perceives as failures in this President, and she seems to have enough time to speak at "Tea Parties." She has enough time to pontificate on the evils of providing healthcare to everyone, conveniently using Trig as a tool to manipulate opinion. Heck, she's been able to squeeze in writing a book (I use the term "writing" loosely) and promote it at book signings all over the country.
Here's a novel idea Ms.Palin. You want those of us in the DS community to take you seriously, perhaps you should consider engaging, instead of using your son's diagnosis as a convenient prop in your endless quest of self-promotion. You're mighty good at talking the talk. Why don't you wipe off some of that lipstick and walk the walk. I, for one, am not holding my breath. Given that you willingly put his life at risk to go make a speech, I personally don't think you hold your son in as high regard as the rest of us. It's a damn shame, really. Trig has such great potential, if he only had a mother who was interested in being his advocate, even when it's not to her benefit.
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