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.
Saturday, April 03, 2010
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.
Friday, September 18, 2009
A couple more steps
As I was driving yesterday afternoon, a thought came to me unbidden: I had in my possession a business card for the child psychologist who was part of E.'s evaluation team. The one that told us to come back in a year and see where he was then. The impression A. and I had at the time was that the evaluation team was split and that she might lean towards the diagnosis.
In any case, we were back in the queue for the re-evaluation. When we called this summer, we were told we would need to fill out the paperwork again, go through the whole process. This didn't seem quite right, but we couldn't remember any explicit promises that there'd be a shorter line for the re-eval, so we did as we were told.
So I called the psychologist this morning to let her know about the recent rough patch and get some suggestions. Which boil down mostly to the fact that the adults around him need to know and understand his communication limitations. While we need to do some advocating, the main key will be getting his teacher to communicate more fully and on a regular, preferably daily, basis. I suspect this will be harder than it looks on paper since most of my communication with the teacher so far have left me unsatisfied; she never provides all the information I'm looking for and is not so good on following through. It will take a lot of effort on our part.
There was, of course, an ulterior motive in making the call today, and I didn't have to do much of anything to get movement in that direction. The psychologist pulled up E.'s record to remind herself of the assessment. I answered one of her questions that we were in line for the re-eval, but didn't have an appointment set up yet. She mentioned that she didn't see why we should have to go through the whole process again since he's already an established patient and they have his history on record.
Turns out that there was a change in the administrative staff this past summer, so our status of re-eval was not handled properly. We got a call this afternoon to schedule our appointment--not for a little over a month, but better than what they'd been telling us before.
I don't think a diagnosis will be a cure-all. But, as I explained to the psychologist, I think it will give us better access to services and some terminology that will lead to a better understanding of the cluster of issues E. has--or at least sound official enough that a teacher might take heed. Currently, there are several things his therapists are sneaking in without them being part of his IEP; with an autism or Asperger's diagnosis, he would change categories and these issues would be addressed head on in his paperwork.
We've still got an uphill battle. We need to address the current problems now and not let them go any further. And I already know it won't be easy. But I'll take the small victory for today. I'm too exhausted not to.
In any case, we were back in the queue for the re-evaluation. When we called this summer, we were told we would need to fill out the paperwork again, go through the whole process. This didn't seem quite right, but we couldn't remember any explicit promises that there'd be a shorter line for the re-eval, so we did as we were told.
So I called the psychologist this morning to let her know about the recent rough patch and get some suggestions. Which boil down mostly to the fact that the adults around him need to know and understand his communication limitations. While we need to do some advocating, the main key will be getting his teacher to communicate more fully and on a regular, preferably daily, basis. I suspect this will be harder than it looks on paper since most of my communication with the teacher so far have left me unsatisfied; she never provides all the information I'm looking for and is not so good on following through. It will take a lot of effort on our part.
There was, of course, an ulterior motive in making the call today, and I didn't have to do much of anything to get movement in that direction. The psychologist pulled up E.'s record to remind herself of the assessment. I answered one of her questions that we were in line for the re-eval, but didn't have an appointment set up yet. She mentioned that she didn't see why we should have to go through the whole process again since he's already an established patient and they have his history on record.
Turns out that there was a change in the administrative staff this past summer, so our status of re-eval was not handled properly. We got a call this afternoon to schedule our appointment--not for a little over a month, but better than what they'd been telling us before.
I don't think a diagnosis will be a cure-all. But, as I explained to the psychologist, I think it will give us better access to services and some terminology that will lead to a better understanding of the cluster of issues E. has--or at least sound official enough that a teacher might take heed. Currently, there are several things his therapists are sneaking in without them being part of his IEP; with an autism or Asperger's diagnosis, he would change categories and these issues would be addressed head on in his paperwork.
We've still got an uphill battle. We need to address the current problems now and not let them go any further. And I already know it won't be easy. But I'll take the small victory for today. I'm too exhausted not to.
Monday, August 24, 2009
Kvetch
It's a chilly and dreary day here. Alone, not quite enough to put me in a sour mood--I'm happy about the temperature drop since I prefer cool weather and, this year in particular, have been looking forward to switching to my fall/winter wardrobe since nearly all of my maternity clothing fits into that category.
But I've spent the morning being reminded of why I've held off so long on getting my teacher certification. (Which, by the way, I've decided to get my teacher certification and enrolled in an online alternative licensure program.) The information available on my course so far does nothing to correct my long-standing perspective that most education courses are fairly simple, but make sure you'll put in time by creating busywork. I have a worksheet to do this week.
I've also been trying to track down and clear up the problem that has led to my acceptance papers showing the wrong endorsement. I'm working on my secondary license, requiring me to pick a subject. Given the state's requirements and my own personal preference, I of course indicated Latin. Except the paperwork came back to me with Language Arts (i.e., English). I've already received several different, sometimes contradictory answers about why this happened--all from the same person. And while I most likely will get a second endorsement in Language Arts (especially if it looks like I'll be pursuing high-school teaching as a full-time gig), I do not have enough credit hours to qualify for it as a first endorsement.
The most recent email informed me that there is no Latin endorsement. So I've sent back an explanation of where its definition appears in the education department's regulations (there's a general Languages endorsement with more specific information in the subsections) and am hoping we can get this cleared up.
Then I'm also dealing with some pregnancy-related anxiety. I had already decided that I wouldn't get the H1N1 vaccination when it becomes available, despite the high priority given to pregnant women. But it looks like that will be a moot point anyway, as there's a decent chance it is currently working its way through our school system. There's a chance it's regular flu, and we won't find out test results until the end of the week, but the speed and severity with which it has hit our middle school sure makes it sound like H1N1. I expect to see it hit the other schools within a few days now. So I will probably end up exposed to it well before the vaccine would be available anyway. Of course, this makes me nervous about accepting sub jobs, so I'm trying to keep a close eye on developments in order to balance my health with our checking account. (And counting down to the end of the month when A. is supposed to get paid for the job she started this month--but we've already played one round of "where's my money?" this summer, so we're waiting to see how this goes.)
I see that I have a new email in my inbox. Hopefully it's the positive conclusion to my endorsement issue. And then, having vented here and had a happy resolution, I can return to the paper I've promised my supervisor.
But I've spent the morning being reminded of why I've held off so long on getting my teacher certification. (Which, by the way, I've decided to get my teacher certification and enrolled in an online alternative licensure program.) The information available on my course so far does nothing to correct my long-standing perspective that most education courses are fairly simple, but make sure you'll put in time by creating busywork. I have a worksheet to do this week.
I've also been trying to track down and clear up the problem that has led to my acceptance papers showing the wrong endorsement. I'm working on my secondary license, requiring me to pick a subject. Given the state's requirements and my own personal preference, I of course indicated Latin. Except the paperwork came back to me with Language Arts (i.e., English). I've already received several different, sometimes contradictory answers about why this happened--all from the same person. And while I most likely will get a second endorsement in Language Arts (especially if it looks like I'll be pursuing high-school teaching as a full-time gig), I do not have enough credit hours to qualify for it as a first endorsement.
The most recent email informed me that there is no Latin endorsement. So I've sent back an explanation of where its definition appears in the education department's regulations (there's a general Languages endorsement with more specific information in the subsections) and am hoping we can get this cleared up.
Then I'm also dealing with some pregnancy-related anxiety. I had already decided that I wouldn't get the H1N1 vaccination when it becomes available, despite the high priority given to pregnant women. But it looks like that will be a moot point anyway, as there's a decent chance it is currently working its way through our school system. There's a chance it's regular flu, and we won't find out test results until the end of the week, but the speed and severity with which it has hit our middle school sure makes it sound like H1N1. I expect to see it hit the other schools within a few days now. So I will probably end up exposed to it well before the vaccine would be available anyway. Of course, this makes me nervous about accepting sub jobs, so I'm trying to keep a close eye on developments in order to balance my health with our checking account. (And counting down to the end of the month when A. is supposed to get paid for the job she started this month--but we've already played one round of "where's my money?" this summer, so we're waiting to see how this goes.)
I see that I have a new email in my inbox. Hopefully it's the positive conclusion to my endorsement issue. And then, having vented here and had a happy resolution, I can return to the paper I've promised my supervisor.
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