I made some noise last spring about putting my focus on writing about Asperger's. At the time, I thought about starting a new blog altogether. Over the summer, this idea morphed a bit until I decided that I wanted to shift the focus here. I already feel that my identity as Mouse has moved this direction and that I have something of a presence, albeit a small one, as a commenter on Asperger's at other blogs.
To this end, I am slowly sticking most of my old posts into draft and making a few minor changes to others. The ones that will not be moth-balled at any point are those that are most directly related to Asperger's. Other posts will come back as I get a chance to go through them and as I write new posts that refer back to them.
In this process, I have also decided to change how I refer to my family members. Scooter, in particular, has outgrown his epithet. Following is the cast of characters and locations. Since I'm not editing comments, I list both their previous and new names. New designations are a mix of first and middle initials.
M.--That's me, Mouse. Aspie mother, grad student (they haven't kicked me out yet), education student (almost have my certification now), middle school teacher.
A.--Formerly Trillian. She's technically neurotypical, but geeky enough and "grazed by the arrow" in some categories, so she's not completely flabbergasted (most of the time) by E.'s and my particular quirks.
E.--Formerly Scooter. 7 1/2 and in second grade. It's been almost exactly a year since his Asperger's diagnosis, but more than three since we started researching it.
J.--Formerly Thumper. 9-months-old. He's been deemed neurotypical by none other than Tony Attwood, but that's a story for another post.
We live in Springfield; the main employer draws lots of scientists and such, so we're a quirky town. My in-laws live in nearby Capital City. Further down the road is Big City.
Monday, October 25, 2010
Wednesday, October 20, 2010
Memento, featuring Marvin
Shortly after my last post, Marvin suffered a catastrophic hard drive failure.
The first sign was that he didn't want to shut down, clinging desperately to consciousness. Then next time I hit the power key, he didn't respond other than to tell me the operating system couldn't be found.
For a couple days, I counted Marvin among the dead and mourned. I borrowed back my older laptop, the one that is mostly used for browsing the Lego website and that has only about 30 minutes of charge in its battery. It was a rebound relationship of convenience--just enough to let me complete my work for my online classes, but absolutely no passion.
I managed to breath new life into Marvin the next week. It took Ubuntu on a thumbdrive and a little messing with the BIOS, but suddenly I had a desktop with icons... and eventually, after many versions and some tweaking, internet access. Marvin was a little different, but I felt that we could make things work again. He asked me for a password, let me change the desktop appearance, promised to hold onto some of my information in a note.
When I came back the next day, Marvin showed no memory of having taken my information. He was nice enough about it--hey, give it to me again, I'm sure it's just a misunderstanding, I'll get it this time. But it quickly became clear that every time Marvin went to sleep, the information just vanished.
Our relationship has changed. He continues to be just as helpful. In particular, he likes to insist that I set a password. I decline matter-of-factly, even when he reminds me that this will leave my information unprotected. I've quit trying to explain to him that there's no point since he won't remember my password to protect my information anyway--we'll have this conversation again tomorrow. I've quietly memorized the key for our internet access... and access at my in-laws' too. Two different combinations of 26 letters and numbers. That's a lot of brain power for this sleep-deprived person!
I feel a little guilty for typing this up on Marvin. On the plus side, he'll have forgotten all about it by tomorrow.
The first sign was that he didn't want to shut down, clinging desperately to consciousness. Then next time I hit the power key, he didn't respond other than to tell me the operating system couldn't be found.
For a couple days, I counted Marvin among the dead and mourned. I borrowed back my older laptop, the one that is mostly used for browsing the Lego website and that has only about 30 minutes of charge in its battery. It was a rebound relationship of convenience--just enough to let me complete my work for my online classes, but absolutely no passion.
I managed to breath new life into Marvin the next week. It took Ubuntu on a thumbdrive and a little messing with the BIOS, but suddenly I had a desktop with icons... and eventually, after many versions and some tweaking, internet access. Marvin was a little different, but I felt that we could make things work again. He asked me for a password, let me change the desktop appearance, promised to hold onto some of my information in a note.
When I came back the next day, Marvin showed no memory of having taken my information. He was nice enough about it--hey, give it to me again, I'm sure it's just a misunderstanding, I'll get it this time. But it quickly became clear that every time Marvin went to sleep, the information just vanished.
Our relationship has changed. He continues to be just as helpful. In particular, he likes to insist that I set a password. I decline matter-of-factly, even when he reminds me that this will leave my information unprotected. I've quit trying to explain to him that there's no point since he won't remember my password to protect my information anyway--we'll have this conversation again tomorrow. I've quietly memorized the key for our internet access... and access at my in-laws' too. Two different combinations of 26 letters and numbers. That's a lot of brain power for this sleep-deprived person!
I feel a little guilty for typing this up on Marvin. On the plus side, he'll have forgotten all about it by tomorrow.
Saturday, April 03, 2010
Awareness
Today is National Autism Awareness Day. I didn't set out to mark it specifically, but really just about every day is autism awareness day here.
J. will be 2-months-old soon. We're working hard to enjoy his babyness--and mostly succeed. He prefers human contact at all times and knows immediately when we've tried to put him down, even if he's in the deepest of sleep. He's smiling and starting to giggle. Some of my favorite moments are when he falls asleep on me, chest-to-chest, sinking in with the greatest contentment.
But A. and I both spend a lot of time wondering and conjecturing, trying to remember how things compare to last time.
He smiles and makes eye contact, even works to catch our eyes. But he smiled extensively for shadows and light, preferring to find patterns around him. And our memories go back to E. smiling at our high-contrast quilt with a triangular pattern and the ceiling fan.
E. showed an aversion to intrusive sounds even in the womb, kicking at the ultrasound wand. J. was more laid-back during such exams, lazily turning away, but not getting worked up. He sleeps through a lot of noises in the house. But then today we sat in Starbucks and he was clearly disturbed by the coffee grinder and blender. And we start to wonder about sensory processing.
J. has a higher than average chance of having some issue on the spectrum. I've seen everything from a 10% to 33% chance, versus the general population's 1%. I imagine there's an even higher chance that he might have some problem, likely in the areas of sensory processing or attention.
We're under no delusion that we can stop J. from having a problem if he's already programmed to have one. But we've already determined that we'll call early intervention, jump on OT, find some help the second we have a clear indication that it's time.
Ironically, we're likely to receive less push-back from our pediatricians this time since J. has an older brother with a diagnosis. This time we won't hear that we're just over-concerned first-time parents. (Even though research has found that first-borns are more likely to be autistic.) (Oh, and our new location and pediatric clinic seems more amenable to the discussion.)
So we're aware, hyper-aware. And today's just another day for us.
J. will be 2-months-old soon. We're working hard to enjoy his babyness--and mostly succeed. He prefers human contact at all times and knows immediately when we've tried to put him down, even if he's in the deepest of sleep. He's smiling and starting to giggle. Some of my favorite moments are when he falls asleep on me, chest-to-chest, sinking in with the greatest contentment.
But A. and I both spend a lot of time wondering and conjecturing, trying to remember how things compare to last time.
He smiles and makes eye contact, even works to catch our eyes. But he smiled extensively for shadows and light, preferring to find patterns around him. And our memories go back to E. smiling at our high-contrast quilt with a triangular pattern and the ceiling fan.
E. showed an aversion to intrusive sounds even in the womb, kicking at the ultrasound wand. J. was more laid-back during such exams, lazily turning away, but not getting worked up. He sleeps through a lot of noises in the house. But then today we sat in Starbucks and he was clearly disturbed by the coffee grinder and blender. And we start to wonder about sensory processing.
J. has a higher than average chance of having some issue on the spectrum. I've seen everything from a 10% to 33% chance, versus the general population's 1%. I imagine there's an even higher chance that he might have some problem, likely in the areas of sensory processing or attention.
We're under no delusion that we can stop J. from having a problem if he's already programmed to have one. But we've already determined that we'll call early intervention, jump on OT, find some help the second we have a clear indication that it's time.
Ironically, we're likely to receive less push-back from our pediatricians this time since J. has an older brother with a diagnosis. This time we won't hear that we're just over-concerned first-time parents. (Even though research has found that first-borns are more likely to be autistic.) (Oh, and our new location and pediatric clinic seems more amenable to the discussion.)
So we're aware, hyper-aware. And today's just another day for us.
Thursday, March 25, 2010
Fan girl squee
I regularly read Amalah. I started with her main blog, but also check in on her at the Advice Smackdown, Bounce Back, Mamapop, and revisited Zero to Forty during my recent pregnancy. What can I say? She makes me laugh, so I'm willing to read about all sorts of stuff I wouldn't seek out otherwise.
But I'm especially devoted to her personal blog since she writes so honestly about dealing with her son Noah's quirks--quirks that remind me of a certain elder son of mine--with humor and love.
So it was both a surprise and thrill to discover that a comment I left on her inaugural post for her new column--"Isn't That Special" on special-needs parenting--had served as the framing device for her second post. And of course it's full of passion and just so right.
Not entirely connected and not that I think my usual writing is anywhere as compelling as Amy's, but I figured I'd throw this out there for my regular readers, especially since I know a bunch of you in real life. I've been thinking seriously about starting a new blog with a more developed focus on Asperger's. Being the parent of a kid with Asperger's, suspecting it in myself, what research is out there, my own half-baked ideas. I'm toying with the idea of writing it fully as myself or at least in a manner more easily traceable to my name. I haven't done much in terms of deciding on a platform or figuring out how to do things like Amazon Associates (since I've read widely on the subject and have a number of books to recommend). So basically my question to you: yea or nay?
But I'm especially devoted to her personal blog since she writes so honestly about dealing with her son Noah's quirks--quirks that remind me of a certain elder son of mine--with humor and love.
So it was both a surprise and thrill to discover that a comment I left on her inaugural post for her new column--"Isn't That Special" on special-needs parenting--had served as the framing device for her second post. And of course it's full of passion and just so right.
Not entirely connected and not that I think my usual writing is anywhere as compelling as Amy's, but I figured I'd throw this out there for my regular readers, especially since I know a bunch of you in real life. I've been thinking seriously about starting a new blog with a more developed focus on Asperger's. Being the parent of a kid with Asperger's, suspecting it in myself, what research is out there, my own half-baked ideas. I'm toying with the idea of writing it fully as myself or at least in a manner more easily traceable to my name. I haven't done much in terms of deciding on a platform or figuring out how to do things like Amazon Associates (since I've read widely on the subject and have a number of books to recommend). So basically my question to you: yea or nay?
Monday, March 08, 2010
Why I'm watching "Parenthood"
I probably would have watched NBC's new show Parenthood regardless, but my initial viewership became guaranteed when I read that Asperger's would come up. I definitely wanted to see how they would handle it.
Max (Max Burkholder) is the son of Adam (Peter Krause) and Christina (Monica Potter). It is clear from the very beginning of the first episode that he is a bit quirky. He's insisted on wearing the same pirate-inspired outfit to school for days. His dad is excited about their upcoming Little League game, but Max is reluctant to put on the uniform. At school (kindergarten or first grade, I'm guessing), he struggles to cut out a shape drawn on construction paper and to interact with the other students. When another kid calls him a freak, he leaps at him and bites.
The meeting at school includes phrases, like "We're not sure this is the right place for him," and a referral to an educational therapist. After that next meeting, Christina goes to find Adam and tells him that the educational therapist thinks they're looking at Asperger's. Adam responds by saying they'll get a tutor for Max and fixates on this even as Christina is trying to redirect him--it's not just the academics, there's the social component. Finally she says, through the tears, "There's something wrong with my baby."
This finally sinks in for Adam when he's standing outside of school with Max while the rest of the family is inside watching his niece's school performance. Max cannot go in because there are candles outside the auditorium, and he has a particularly strong fear of fire. When Zeek (Craig T. Nelson), Adam's father, comes out to suggest that Max just needs to get over it, it's Adam's turn to say, "There's something wrong with my son." Zeek, who is very much of the macho school of living, backs off a little, but I suspect he'll take more to come around fully.
My initial reaction was frustration over all the tears and agony. Our son is fine. He's mainstreamed, has friends, shows affection. I fully expect that he will be able to navigate life--he just needs a little extra support and explicit teaching up front. Move on, don't dwell and wallow.
But at the same time, I could feel my own tears welling up, and it didn't take long before I found myself thinking about the first time we were told the word "autism." Even more importantly, I was able to remember that we are dealing with a kid with 3 years of interventions now. We haven't had to deal with biting since it was vaguely age-appropriate. And then creeps in the memory of the note earlier this year that he had slapped a classmate. Or the fact that he wore a pirate hat this weekend (but backwards, signifying it was a "vacation hat" and don't call it anything else) when we went shoe shopping.
Our family's in a pretty good place now. He's improved and we've adapted. This is the gift of time and perspective.
You can be sure I will continue to watch Parenthood, if for nothing other than to root on Adam, Christina, and Max as they work towards a better place.
Max (Max Burkholder) is the son of Adam (Peter Krause) and Christina (Monica Potter). It is clear from the very beginning of the first episode that he is a bit quirky. He's insisted on wearing the same pirate-inspired outfit to school for days. His dad is excited about their upcoming Little League game, but Max is reluctant to put on the uniform. At school (kindergarten or first grade, I'm guessing), he struggles to cut out a shape drawn on construction paper and to interact with the other students. When another kid calls him a freak, he leaps at him and bites.
The meeting at school includes phrases, like "We're not sure this is the right place for him," and a referral to an educational therapist. After that next meeting, Christina goes to find Adam and tells him that the educational therapist thinks they're looking at Asperger's. Adam responds by saying they'll get a tutor for Max and fixates on this even as Christina is trying to redirect him--it's not just the academics, there's the social component. Finally she says, through the tears, "There's something wrong with my baby."
This finally sinks in for Adam when he's standing outside of school with Max while the rest of the family is inside watching his niece's school performance. Max cannot go in because there are candles outside the auditorium, and he has a particularly strong fear of fire. When Zeek (Craig T. Nelson), Adam's father, comes out to suggest that Max just needs to get over it, it's Adam's turn to say, "There's something wrong with my son." Zeek, who is very much of the macho school of living, backs off a little, but I suspect he'll take more to come around fully.
My initial reaction was frustration over all the tears and agony. Our son is fine. He's mainstreamed, has friends, shows affection. I fully expect that he will be able to navigate life--he just needs a little extra support and explicit teaching up front. Move on, don't dwell and wallow.
But at the same time, I could feel my own tears welling up, and it didn't take long before I found myself thinking about the first time we were told the word "autism." Even more importantly, I was able to remember that we are dealing with a kid with 3 years of interventions now. We haven't had to deal with biting since it was vaguely age-appropriate. And then creeps in the memory of the note earlier this year that he had slapped a classmate. Or the fact that he wore a pirate hat this weekend (but backwards, signifying it was a "vacation hat" and don't call it anything else) when we went shoe shopping.
Our family's in a pretty good place now. He's improved and we've adapted. This is the gift of time and perspective.
You can be sure I will continue to watch Parenthood, if for nothing other than to root on Adam, Christina, and Max as they work towards a better place.
Thursday, October 29, 2009
Official
To borrow a line from A.: In a move that surprised no one, he has been diagnosed with Asperger's.
But it's official now. Full report to follow, etc, etc.
Nonetheless, they sent us away with a short letter making it official. And a good number of suggestions.
The hardest part will be figuring out if we can get any services close to home or if we'll be traveling to Big City on a more regular basis. That will be the case for certain things, like the nutritional counseling we can get through their clinic, but we're hoping to find a good, local match for some cognitive behavior therapy once we get onto our new health insurance.
I also came away with a few suggestions for people to call for myself. (And not even a batted eye when I asked.)
This is not a panacea, but at least we feel like we've been on the right track and have opened up a few more avenues for help.
But it's official now. Full report to follow, etc, etc.
Nonetheless, they sent us away with a short letter making it official. And a good number of suggestions.
The hardest part will be figuring out if we can get any services close to home or if we'll be traveling to Big City on a more regular basis. That will be the case for certain things, like the nutritional counseling we can get through their clinic, but we're hoping to find a good, local match for some cognitive behavior therapy once we get onto our new health insurance.
I also came away with a few suggestions for people to call for myself. (And not even a batted eye when I asked.)
This is not a panacea, but at least we feel like we've been on the right track and have opened up a few more avenues for help.
Thursday, October 22, 2009
Closer to official
We've only been asking questions since E. was 18-months-old. To be fair, A. is the one who initiated them. Mostly I felt like I understood why he was odd in the ways he was--and most of them pointed to my family's bank of personal quirks, so I mostly didn't want to follow that trail too far, at first.
I wrote a while back about a particular student whom I recognized as likely having Asperger's. There's a moment I left out from that anecdote. As I read the article, I so got it. I completely understood where the kids they were profiling were coming from. But, I told myself then and a thousand times after, I am empathetic to a fault and overly sensitive to others' feelings. That means this isn't me.
A couple years later, A. and I were sitting in the coffeeshop near our condo. Our conversation, as was common in those days shortly after E. turned 4, turned to autism. Both of us had moved into fix-it mode, lining up OT and looking into other options for him. I had mostly gotten over the guilt I'd been feeling about the role of my genetics. And I finally spoke out loud an idea that had been brewing for a while at that point: I have Asperger's. My ability to read emotions and my sensitivity to others are both the result of years of observing and categorizing.
I think that since then, we've known that E. would end up just on one side or the other of the diagnostic line for autism spectrum disorder--our guess has long been Asperger's, a suspicion that has only grown stronger as E. gets older.
And now we're moving towards official.
E. went in for educational testing last week, the ADOS administered by the district's autism team.
The written report will take a few weeks yet, but the word has come back to us that he most definitely qualifies. He goes in for a full evaluation and possible medical diagnosis soon. We don't expect that outcome to be substantially different, perhaps just further refinement of where we are now.
This reminds me a bit of when we got our second-parent adoption. Suddenly we had official recognition, but at the same time nothing changed. Everything is exactly as we've known it to be all along.
Except that this time there's the kernel of the potential for where this will take us down the line.
I wrote a while back about a particular student whom I recognized as likely having Asperger's. There's a moment I left out from that anecdote. As I read the article, I so got it. I completely understood where the kids they were profiling were coming from. But, I told myself then and a thousand times after, I am empathetic to a fault and overly sensitive to others' feelings. That means this isn't me.
A couple years later, A. and I were sitting in the coffeeshop near our condo. Our conversation, as was common in those days shortly after E. turned 4, turned to autism. Both of us had moved into fix-it mode, lining up OT and looking into other options for him. I had mostly gotten over the guilt I'd been feeling about the role of my genetics. And I finally spoke out loud an idea that had been brewing for a while at that point: I have Asperger's. My ability to read emotions and my sensitivity to others are both the result of years of observing and categorizing.
I think that since then, we've known that E. would end up just on one side or the other of the diagnostic line for autism spectrum disorder--our guess has long been Asperger's, a suspicion that has only grown stronger as E. gets older.
And now we're moving towards official.
E. went in for educational testing last week, the ADOS administered by the district's autism team.
The written report will take a few weeks yet, but the word has come back to us that he most definitely qualifies. He goes in for a full evaluation and possible medical diagnosis soon. We don't expect that outcome to be substantially different, perhaps just further refinement of where we are now.
This reminds me a bit of when we got our second-parent adoption. Suddenly we had official recognition, but at the same time nothing changed. Everything is exactly as we've known it to be all along.
Except that this time there's the kernel of the potential for where this will take us down the line.
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