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.
Thursday, October 29, 2009
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.
Tuesday, August 18, 2009
The terrible twos at six
In all the reading I've done on developmental delays and the like, I seem to remember coming across the idea that children who do not hit certain milestones at the expected time will go through them at a later date. I feel like we've been hitting at least a couple of these this summer.
As a toddler and preschooler, E. did not get into very much. We did some babyproofing before he could even crawl and then didn't get to much more. We always figured that we kept a pretty good eye on him and would be able to take care of any location that caught his fancy. We did not add any more latches, didn't need to. In retrospect, I suspect it is part of the Asperger's; since he tends to see the world from his own perspective only and just as it is presented to him, he simply didn't think to open drawers and doors and climb on things.
Similarly, he has not put on great displays of independence. Sure, he has learned to do more for himself, but his proclamations of "I can do it myself" have never been as frequent or vehement as one might expect from a preschooler, even as stubborn as he is.
That has changed a lot. He's into everything now. My mother-in-law has said that she never worried about leaving him for a short time, but now she knows that any amount of silence is not a good thing. At my sister's, he kept showing up with rolls of tape, taken surreptitiously from a particular drawer. When A. and I stocked up on medicines, in order to use up her flexible spending account before she was off payroll, I installed the first cabinet latch in our house--not because of the baby we were then hoping would be in our future, but because we worried that E. would be into it.
The past few days have added his loudly announced belief that he doesn't need me anymore. (Me specifically due to being the one who has denied him some things.) He's chafing at the bit and wanting to be bigger, older, able to do more.
While this may be developmentally appropriate for him at this point, it is more wearing than I imagine it would have been at 2 or 3 (or even 4). The combination of a couple more years and a creative mind is problematic. He can reach higher than before, even more so now that he's grown a couple inches this summer, and has the ability to plot out at least part of his action ahead of time. His idea of what constitutes independence is grander and more sweeping now--we've had to say no to the driving and remain insistent about holding hands (or finger, as he allowed this morning) when crossing certain streets.
Some good may come of this--he's suddenly interested in not wearing pull-ups at night since they're for babies--but I can't wait for the rest of this to pass.
As a toddler and preschooler, E. did not get into very much. We did some babyproofing before he could even crawl and then didn't get to much more. We always figured that we kept a pretty good eye on him and would be able to take care of any location that caught his fancy. We did not add any more latches, didn't need to. In retrospect, I suspect it is part of the Asperger's; since he tends to see the world from his own perspective only and just as it is presented to him, he simply didn't think to open drawers and doors and climb on things.
Similarly, he has not put on great displays of independence. Sure, he has learned to do more for himself, but his proclamations of "I can do it myself" have never been as frequent or vehement as one might expect from a preschooler, even as stubborn as he is.
That has changed a lot. He's into everything now. My mother-in-law has said that she never worried about leaving him for a short time, but now she knows that any amount of silence is not a good thing. At my sister's, he kept showing up with rolls of tape, taken surreptitiously from a particular drawer. When A. and I stocked up on medicines, in order to use up her flexible spending account before she was off payroll, I installed the first cabinet latch in our house--not because of the baby we were then hoping would be in our future, but because we worried that E. would be into it.
The past few days have added his loudly announced belief that he doesn't need me anymore. (Me specifically due to being the one who has denied him some things.) He's chafing at the bit and wanting to be bigger, older, able to do more.
While this may be developmentally appropriate for him at this point, it is more wearing than I imagine it would have been at 2 or 3 (or even 4). The combination of a couple more years and a creative mind is problematic. He can reach higher than before, even more so now that he's grown a couple inches this summer, and has the ability to plot out at least part of his action ahead of time. His idea of what constitutes independence is grander and more sweeping now--we've had to say no to the driving and remain insistent about holding hands (or finger, as he allowed this morning) when crossing certain streets.
Some good may come of this--he's suddenly interested in not wearing pull-ups at night since they're for babies--but I can't wait for the rest of this to pass.
Thursday, August 13, 2009
Back to school
The other night I had a school anxiety dream--about Scooter's school. It was right before the class lists were going to go up and I was inside the school and knew I shouldn't be there and needed to get outside. See, the tradition seems to be that the class lists go up just as the secretaries are leaving for the day, meaning the building is locked up and empty just as people start to get their information.
I've spent the summer wondering which class Scooter will end up in and if it will be a good fit. I found out at the end of the school year who the two 1st grade teachers would be; Mr. Teacher and the classroom assistant gave me a brief rundown. Although both teachers are solid in academics, the teacher who is more academically oriented is also stricter and without much humor. The other teacher is more fun, but a bit flaky. The first teacher would probably provide more structure, the second more flexibility. I could see how he would have trouble with either one, but was hoping a bit more for Mrs. Fun. I worried that since both Mr. Teacher and his assistant thought Mrs. Strict would be a good match with Scooter academically, he might end up in that class.
My worry was allayed a bit by knowing that Scooter has people on his IEP team who very much want him to succeed. A couple different conversations with his OT included heavy intimation that they would make sure he ended up in the class they thought best for him. So I've tried to remain calm with the knowledge that regardless of which teacher Scooter was assigned to, it would be the best fit available.
As I walked up to the school with Scooter to check the lists, I hit upon a sign I would look for that all had been arranged as planned. Scooter had both OT and speech therapy with a particular classmate, a kid who has some similar issues. It seems likely that this pairing would continue and it would be easiest for the therapists to schedule them together if they're in the same class.
Sure enough, Scooter's name appeared just a few lines below this kid's--under the Mrs. Fun column.
Even better, he has two other friends in his class, including one with whom he's had several playdates this summer. We even like the mother a lot.
Even better than that... the two kids I least wanted him to have in class--both picked on him and one of them is a master manipulator--are with the other teacher.
The teacher's name is only an abstract concept to him right now. I think even the list of kids he knows is mostly abstract. It'll take being in the classroom and starting back into the routine of school to make this real. But at least he's excited to go back and maybe I can stop with the displaced anxiety dreams already.
I've spent the summer wondering which class Scooter will end up in and if it will be a good fit. I found out at the end of the school year who the two 1st grade teachers would be; Mr. Teacher and the classroom assistant gave me a brief rundown. Although both teachers are solid in academics, the teacher who is more academically oriented is also stricter and without much humor. The other teacher is more fun, but a bit flaky. The first teacher would probably provide more structure, the second more flexibility. I could see how he would have trouble with either one, but was hoping a bit more for Mrs. Fun. I worried that since both Mr. Teacher and his assistant thought Mrs. Strict would be a good match with Scooter academically, he might end up in that class.
My worry was allayed a bit by knowing that Scooter has people on his IEP team who very much want him to succeed. A couple different conversations with his OT included heavy intimation that they would make sure he ended up in the class they thought best for him. So I've tried to remain calm with the knowledge that regardless of which teacher Scooter was assigned to, it would be the best fit available.
As I walked up to the school with Scooter to check the lists, I hit upon a sign I would look for that all had been arranged as planned. Scooter had both OT and speech therapy with a particular classmate, a kid who has some similar issues. It seems likely that this pairing would continue and it would be easiest for the therapists to schedule them together if they're in the same class.
Sure enough, Scooter's name appeared just a few lines below this kid's--under the Mrs. Fun column.
Even better, he has two other friends in his class, including one with whom he's had several playdates this summer. We even like the mother a lot.
Even better than that... the two kids I least wanted him to have in class--both picked on him and one of them is a master manipulator--are with the other teacher.
The teacher's name is only an abstract concept to him right now. I think even the list of kids he knows is mostly abstract. It'll take being in the classroom and starting back into the routine of school to make this real. But at least he's excited to go back and maybe I can stop with the displaced anxiety dreams already.
Monday, August 10, 2009
In search of the wellspring of patience
When Scooter was born, I learned a lot about myself. One thing that surprised me was the depth of patience I discovered. Even when I was frustrated and overwhelmed, somehow I managed not to take it out on him. I made it through the initial hormone fluctuations, breastfeeding difficulties, picky eating, and years of sleep problems--crying copiously to Trillian, of course, but not losing my cool with my son. I understood that he simply couldn't help it and that getting agitated wouldn't help the situation.
Increasingly that's not the case.
Intellectually I get how hard some things are for him. It's not as simple as tasting a new food or then eating more than a single bite. He truly does not process our requests until the third or so repetition. He must find one particular toy before he can settle in to go to sleep.
He needs me to guide him gently in the right direction, understanding when it's more than he can handle for the moment.
But I find myself becoming short and sharp more often than I would like. And wishing he could just get over it--even though I know it's not that simple.
I worry that my patience is gone forever and that Scooter will remember me as being more tense and curt than fun. I worry that the next child will never know the mother who had bottomless reserves of calm and that I will be frazzled and frustrated from day one. I know that I don't have the ability to step out of the situation and determine the best way to find my center again.
Summer vacation has been particularly difficult. What does it say that I think all of us view the start of the school year as our real vacation?
Increasingly that's not the case.
Intellectually I get how hard some things are for him. It's not as simple as tasting a new food or then eating more than a single bite. He truly does not process our requests until the third or so repetition. He must find one particular toy before he can settle in to go to sleep.
He needs me to guide him gently in the right direction, understanding when it's more than he can handle for the moment.
But I find myself becoming short and sharp more often than I would like. And wishing he could just get over it--even though I know it's not that simple.
I worry that my patience is gone forever and that Scooter will remember me as being more tense and curt than fun. I worry that the next child will never know the mother who had bottomless reserves of calm and that I will be frazzled and frustrated from day one. I know that I don't have the ability to step out of the situation and determine the best way to find my center again.
Summer vacation has been particularly difficult. What does it say that I think all of us view the start of the school year as our real vacation?
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