Just over a year go, after the first mention that Scooter might be on the autism spectrum, Trillian and I struggled to wrap our minds around that idea. Our hope, right at the beginning, was that getting him the therapy that had been suggested to us would mean that he would improve enough to be (at least) just on the other side of the diagnostic criteria.
Once we had some time to settle into the idea, read a lot, watch our son thrive in occupational therapy, we began to worry that we would push him just out of a diagnosis. The fear wasn't enough to stop us from pushing forward with interventions that seemed to make a difference.
Guess what we just found out?
The evaluators told us that he is "as borderline as a kid can be." But for the time being, they don't feel he quite meets the diagnostic criteria for autism, PDD-NOS, or Asperger's, primarily in the social skills* category. The final deciding factor (and apparently it was a lively debate that took the better part of an hour) was his improvement of the past 12-18 months and the idea that if he continues on the same trajectory for another year, he will definitely not meet the criteria.
From the history and previous evaluations we provided, they agreed that they probably would have diagnosed him a year ago (PDD-NOS, I'm guessing), but that there is a small subset of children who improve beyond their diagnosis in a few years. And they didn't tell us to stop any of the therapy he currently receives, even suggested looking for a social skills speech group to help with his fluency issues.
A year ago, I would have burst into tears if given a report like this. I would have felt dismissed and unsupported. It's a little easier now because we have support through the school system. My biggest fear right now is that he might no longer qualify for an IEP under his current category before he's ready to leave those supports. (I think, though desperately need to check this with his OT, that the catch-all category--other developmental delay--he's in can only be used for a limited number of years.)
So we have to wait another year for another round of testing.
*The fact that he has friends is, apparently, enough to qualify as having social skills that move him beyond the diagnostic criteria. Despite having no real answer to the question "What is a friend?" and "problematic" eye contact.
Tuesday, September 30, 2008
Wednesday, September 24, 2008
Happiness is a drawer full of green coffee beans
[My first (almost) Wordless Wednesday. If you can't tell, the coffee is from Sweet Maria's. The smell of it roasting is heavenly.]
Tuesday, September 23, 2008
When two Aspies are not on the same page
The players:
Neighborhood Kid (NK): Same 8-year-old who asked me about which church I attend.
Mouse (M): A blogger compelled to share with the vast internets.
To be absolutely fair, neither player has an official diagnosis of anything, Asperger's or otherwise. On the other hand, NK's mother has stated that he is generally oblivious of social cues, sarcasm, and other nuances. And M, although she prides herself in being quite observant about people, still fails spectacularly in that area on occasion.
Scene:
NK is at the door, asking if M's son (Scooter, another potential Aspie) would like to come play outside.
NK (inquisitively turning to M): So do you take care of Scooter?
M (a little befuddled, trying to clarify): Like, during the day? (receives nod) Well, I take him to and from school. But I'm a graduate student, so when he's in school, I read and study.
NK (obviously not quite the answer he wanted, but not sure how to formulate the next question): . . .
M (aware NK wants to say more, but not sure where this is going): . . .
Scooter (completely oblivious to the exchange, running out the door): OK, let's go.
It was only as NK started to follow Scooter that I realized what NK was really asking: Am I the nanny? Apparently this is how having two grown women living in one house with a child makes the most sense to him.
Neighborhood Kid (NK): Same 8-year-old who asked me about which church I attend.
Mouse (M): A blogger compelled to share with the vast internets.
To be absolutely fair, neither player has an official diagnosis of anything, Asperger's or otherwise. On the other hand, NK's mother has stated that he is generally oblivious of social cues, sarcasm, and other nuances. And M, although she prides herself in being quite observant about people, still fails spectacularly in that area on occasion.
Scene:
NK is at the door, asking if M's son (Scooter, another potential Aspie) would like to come play outside.
NK (inquisitively turning to M): So do you take care of Scooter?
M (a little befuddled, trying to clarify): Like, during the day? (receives nod) Well, I take him to and from school. But I'm a graduate student, so when he's in school, I read and study.
NK (obviously not quite the answer he wanted, but not sure how to formulate the next question): . . .
M (aware NK wants to say more, but not sure where this is going): . . .
Scooter (completely oblivious to the exchange, running out the door): OK, let's go.
It was only as NK started to follow Scooter that I realized what NK was really asking: Am I the nanny? Apparently this is how having two grown women living in one house with a child makes the most sense to him.
Thursday, September 18, 2008
Talisman
Tucked into a pocket of my purse is a small symbol of hope and expectation. It's round and shiny.
And optimistically engraved with my address, phone number, and the name of my dog.
He's not officially mine yet. But we're basically down to the details of meeting and payment. I found him at a rescue one state over by searching on the internet (of course).
A few weeks ago, Scooter suddenly changed his mind. Instead of telling me "no dog, no way," he decided he likes dogs after all. ("But no cat," he emphatically declared to me one day.) He has maintained this stance ever since, even as I gave him more space and slowly filled out the application.
The dog's tag will go on an orange collar, per Scooter's request. He will sleep on the dog bed in my work area and greet Scooter each morning after they've both enjoyed a good night's sleep. Scooter is quite insistent on this scenario.
And the shiny tag makes me that much more inclined to agree.
And optimistically engraved with my address, phone number, and the name of my dog.
He's not officially mine yet. But we're basically down to the details of meeting and payment. I found him at a rescue one state over by searching on the internet (of course).
A few weeks ago, Scooter suddenly changed his mind. Instead of telling me "no dog, no way," he decided he likes dogs after all. ("But no cat," he emphatically declared to me one day.) He has maintained this stance ever since, even as I gave him more space and slowly filled out the application.
The dog's tag will go on an orange collar, per Scooter's request. He will sleep on the dog bed in my work area and greet Scooter each morning after they've both enjoyed a good night's sleep. Scooter is quite insistent on this scenario.
And the shiny tag makes me that much more inclined to agree.
Sunday, September 14, 2008
The reason I need a new cell phone (with camera)
Because a picture would have so much more impact than me just telling you about the sign I saw on my adventures this weekend: "Ho-Made Chili."
Thursday, September 11, 2008
Moving towards answers on a different front
One positive that came out of my unhappy meeting with Cid (Clueless Infertility Doctor) is that our endless go around on Asperger's served as a catalyst for me to finish up the paperwork we needed to compile for Scooter's evaluation.
The process in our state is a bit different than it was in Ontario. Instead of getting on a waitlist immediately and not having to do a lot of paperwork until we'd made it to the first stage (and then waiting to see if they'd recommend a full evaluation after the initial appointment and, I assume, more paperwork then), we had to fill out the paperwork up-front--with the payoff being that our first appointment would be the evaluation.
The clinic's cover letter said the wait could be 6 or more months. The woman Trillian spoke to on the phone said to expect at least 4 months. More waiting, but it was shorter than we'd had in Toronto.
We sent the paperwork off in mid-June. Twenty pages of their questionnaires and another 60+ of supporting papers, all the evaluations we have on file from the past 18 months.
Scooter's appointment is at the end of this month. 3 1/2 months. They wanted to get him immediately. It took this long only because every member of the evaluation team reads through a child's paperwork before they meet and discuss their suspicions.
Trillian thinks that their eagerness to get Scooter in quickly is due to the fact that he has just started school and they want to make sure he can get necessary supports in that environment as soon as possible. Both of us still expect an Asperger's diagnosis, although 5 1/2 is on the young side for that particular diagnosis. (Did you know that the average age of diagnosis for Asperger's is 11?)
I'm not sure what other support Scooter might need at school. He already goes to OT, and his IEP addresses issues like sitting on the periphery to limit distractions. His teacher seems attuned to his personality, and Scooter definitely fits in with his class on a social level. Again, the makeup of the town means that Scooter is not especially odd and most of the kids are already accustomed to being around others with quirks.
But I do think that there would be additional benefit to having a label at last, especially in an educational setting. It gives us more authority in explaining our son; there is more leverage in definitively saying "Asperger's" instead of "Asperger's-like" or "high end of the spectrum."
And if I may turn the spotlight to myself and get a little introspective, this process turns many questions back on me.
In doing all of this research and reading on autism, I've become dead-certain that I too have Asperger's. That it is a family trait, heavily on my mother's side, a bit less so on my father's, but there for at least four generations. So what does this mean?
Here I am, pushing, pushing, pushing to get this evaluation for my son, long decided that I want the label if one is suggested. But what about me?
I balk at any evaluation for myself. Part of this is an uncertainty of where to begin. There may be waitlists, but autism evaluation clinics for children, in one form or another, can be found all over the place. Grownups, not so much. I know, again from my readings, that it is possible to get a diagnosis as an adult, but it can be more difficult since it requires balancing childhood personality with adult function.
But the other reason I've resisted is the label. Do I need one? Do I want one? What would I do with a label if I had one? I know that I can function fine in the life I have. My field is a particularly nerdy one, so it's not like I stand out as being unusually odd. If I become a professor, my immediate colleagues will be just as quirky as I am (and, if previous experience predicts, less aware of it). So I'm unlikely to need the buffer of an official diagnosis at this point in my life.
But then again, I see so many autism alarmists and critics who use, as their proof of the supposed autism epidemic, the rhetorical (to them) question, "So where are all the autistic adults?" And I wonder if I have an obligation and responsibility to wave my hand and say, "Right here."
Luckily, I can sit this one out a bit longer and focus on Scooter's evaluation instead.
The process in our state is a bit different than it was in Ontario. Instead of getting on a waitlist immediately and not having to do a lot of paperwork until we'd made it to the first stage (and then waiting to see if they'd recommend a full evaluation after the initial appointment and, I assume, more paperwork then), we had to fill out the paperwork up-front--with the payoff being that our first appointment would be the evaluation.
The clinic's cover letter said the wait could be 6 or more months. The woman Trillian spoke to on the phone said to expect at least 4 months. More waiting, but it was shorter than we'd had in Toronto.
We sent the paperwork off in mid-June. Twenty pages of their questionnaires and another 60+ of supporting papers, all the evaluations we have on file from the past 18 months.
Scooter's appointment is at the end of this month. 3 1/2 months. They wanted to get him immediately. It took this long only because every member of the evaluation team reads through a child's paperwork before they meet and discuss their suspicions.
Trillian thinks that their eagerness to get Scooter in quickly is due to the fact that he has just started school and they want to make sure he can get necessary supports in that environment as soon as possible. Both of us still expect an Asperger's diagnosis, although 5 1/2 is on the young side for that particular diagnosis. (Did you know that the average age of diagnosis for Asperger's is 11?)
I'm not sure what other support Scooter might need at school. He already goes to OT, and his IEP addresses issues like sitting on the periphery to limit distractions. His teacher seems attuned to his personality, and Scooter definitely fits in with his class on a social level. Again, the makeup of the town means that Scooter is not especially odd and most of the kids are already accustomed to being around others with quirks.
But I do think that there would be additional benefit to having a label at last, especially in an educational setting. It gives us more authority in explaining our son; there is more leverage in definitively saying "Asperger's" instead of "Asperger's-like" or "high end of the spectrum."
And if I may turn the spotlight to myself and get a little introspective, this process turns many questions back on me.
In doing all of this research and reading on autism, I've become dead-certain that I too have Asperger's. That it is a family trait, heavily on my mother's side, a bit less so on my father's, but there for at least four generations. So what does this mean?
Here I am, pushing, pushing, pushing to get this evaluation for my son, long decided that I want the label if one is suggested. But what about me?
I balk at any evaluation for myself. Part of this is an uncertainty of where to begin. There may be waitlists, but autism evaluation clinics for children, in one form or another, can be found all over the place. Grownups, not so much. I know, again from my readings, that it is possible to get a diagnosis as an adult, but it can be more difficult since it requires balancing childhood personality with adult function.
But the other reason I've resisted is the label. Do I need one? Do I want one? What would I do with a label if I had one? I know that I can function fine in the life I have. My field is a particularly nerdy one, so it's not like I stand out as being unusually odd. If I become a professor, my immediate colleagues will be just as quirky as I am (and, if previous experience predicts, less aware of it). So I'm unlikely to need the buffer of an official diagnosis at this point in my life.
But then again, I see so many autism alarmists and critics who use, as their proof of the supposed autism epidemic, the rhetorical (to them) question, "So where are all the autistic adults?" And I wonder if I have an obligation and responsibility to wave my hand and say, "Right here."
Luckily, I can sit this one out a bit longer and focus on Scooter's evaluation instead.
Friday, September 05, 2008
We're laughing over here
Some Scooter episodes I've been meaning to share. These are the moments that have made it easier to get through recent toilet issues (thanks, we think, to the first virus of the school year, which has made Scooter vaguely uncomfortable, but not sick enough to stay home).
***
We've been gently broaching the subject of a sibling again with Scooter. We're still at least a couple months off from trying, but have taken the opportunity to suggest that this is a possibility on those occasions when the topic comes up.
Scooter has been most interested in potential baby names. He easily took the boy name we've almost settled on, but came up with "Albison" for a girl. And no, the 'b' is not a typo. Not sure where that came from, but I did eventually get him to agree that our preferred girl name would work for a baby sister.
Of course, he was touching upon Trillian's worst fear when he announced that he would have a baby brother and a baby sister.
***
When we were at his grandparents' house recently, two strange (as in we'd never seen them before) ran through the backyard. My mother-in-law was not too happy to see unknown dogs, and Scooter was similarly distressed. He decided that he needed to make, right at that very moment, a "No Dogs" sign. Supplied with a piece of paper and a marker, he drew a dog and then a circle with a slash, topping it all off with "NODOGZ" (the 's' was backwards, but he knew it was supposed to be an s).
***
Speaking of spelling, the bathtub foam letters remain a favorite, but the play has changed. Instead of nonsense words, he has started spelling out phrases and sentences. Sometimes he'll demand our help in spelling the words, but we have come back to the bathroom on occasion to find fully formed sentences. With only a minimum of invented spelling (e.g., 'Y' for 'why').
He has an amazing memory for the words he's quizzed us on; I'm no longer surprised when he recalls a word from weeks before.
***
School continues to go well for Scooter. I am volunteering regularly in his classroom; it looks like I'll usually be there for literacy stations. I enjoy seeing all of the different kids and, even after only a couple visits, developing relationships with some of them.
It's a boy-heavy class, but Scooter's teacher seems to have just the right touch with them. We haven't had a specific parent-teacher or IEP meeting yet this year, but Mr. Teacher seems to get how to handle Scooter's meltdowns so that they are short and there's no lingering embarrassment.
***
Of course, Scooter may be spreading vicious rumors, unknowingly of course.
There was a substitute in the class. Scooter knew her a bit since she spent some time in the preschool classroom last year. As we were walking home, Scooter explained to me why they had a substitute.
"He is marrying his cousin," he proclaimed to me.
A little bit more: "He had to get on an airplane and go far away."
"Maybe," I countered, "he went to his cousin's wedding?"
***
School definitely agrees with him. He likes being a big kid and is eating up the curriculum. On our last car ride, he serenaded us with a number song. After our frustrations with the preschool program last year, it's nice to feel like our choice to move may be for the best after all.
***
We've been gently broaching the subject of a sibling again with Scooter. We're still at least a couple months off from trying, but have taken the opportunity to suggest that this is a possibility on those occasions when the topic comes up.
Scooter has been most interested in potential baby names. He easily took the boy name we've almost settled on, but came up with "Albison" for a girl. And no, the 'b' is not a typo. Not sure where that came from, but I did eventually get him to agree that our preferred girl name would work for a baby sister.
Of course, he was touching upon Trillian's worst fear when he announced that he would have a baby brother and a baby sister.
***
When we were at his grandparents' house recently, two strange (as in we'd never seen them before) ran through the backyard. My mother-in-law was not too happy to see unknown dogs, and Scooter was similarly distressed. He decided that he needed to make, right at that very moment, a "No Dogs" sign. Supplied with a piece of paper and a marker, he drew a dog and then a circle with a slash, topping it all off with "NODOGZ" (the 's' was backwards, but he knew it was supposed to be an s).
***
Speaking of spelling, the bathtub foam letters remain a favorite, but the play has changed. Instead of nonsense words, he has started spelling out phrases and sentences. Sometimes he'll demand our help in spelling the words, but we have come back to the bathroom on occasion to find fully formed sentences. With only a minimum of invented spelling (e.g., 'Y' for 'why').
He has an amazing memory for the words he's quizzed us on; I'm no longer surprised when he recalls a word from weeks before.
***
School continues to go well for Scooter. I am volunteering regularly in his classroom; it looks like I'll usually be there for literacy stations. I enjoy seeing all of the different kids and, even after only a couple visits, developing relationships with some of them.
It's a boy-heavy class, but Scooter's teacher seems to have just the right touch with them. We haven't had a specific parent-teacher or IEP meeting yet this year, but Mr. Teacher seems to get how to handle Scooter's meltdowns so that they are short and there's no lingering embarrassment.
***
Of course, Scooter may be spreading vicious rumors, unknowingly of course.
There was a substitute in the class. Scooter knew her a bit since she spent some time in the preschool classroom last year. As we were walking home, Scooter explained to me why they had a substitute.
"He is marrying his cousin," he proclaimed to me.
A little bit more: "He had to get on an airplane and go far away."
"Maybe," I countered, "he went to his cousin's wedding?"
***
School definitely agrees with him. He likes being a big kid and is eating up the curriculum. On our last car ride, he serenaded us with a number song. After our frustrations with the preschool program last year, it's nice to feel like our choice to move may be for the best after all.
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