Yesterday, Blink and I sat in the unseasonably hot sunshine, soaking it in, since we had a few moments to while away before his therapy appointment began. Blink began discussing genes and autism and the possibility that someday parents might be able to, in his words, "stop severe autism" before a child was even born. "How do you feel about that?" I asked. "I think it's pretty cool," replied. So I went a step further. "Blink, if you could choose, would you choose to have Asperger's Syndrome?"
He didn't miss a beat.
"No. If a UFO could come and suck up all of the autism in me, I would still like everything I like. But life would be a lot easier. Hey, wouldn't it be cool if a UFO came and did that? I wish it could come and take away the autism and the ADHD. Wouldn't that be crazy?"
I found this absolutely fascinating. And a little bit unexpected. I realized by his quick response that he has thought about this before. He knew where he stood on the issue.
I wonder how his feelings will change (or not) as he grows older.
Saturday, October 9, 2010
Wednesday, September 8, 2010
The Waiting List, Part II
The second installment in how we came to join the throngs on the waiting list:
Part II:
I sent Blink off to kindergarten with a cheery smile affixed to my face, a balloon of fear and hope inflating my chest, causing me to hold my breath.
We made it about a week-and-a-half into the school year before I got a call from Mrs. S., the veteran kindergarten teacher. She was calling, she said, to let me know that Blink was having a little difficulty adjusting to kindergarten and she wondered if I just might have some advice on how to cope with Blink's screaming fits.
And at that very moment, the fairy tale I had carefully constructed in my head— you know, the one in which Blink ran off to school with a smile on his face and we all lived happily ever after — crumbled into a million tiny pieces.
A month later, we had parent teacher conferences. My husband I walked into the bright, orderly kindergarten classroom and sat down on kindergarten-sized chairs, awkwardly trying to assume a composed and dignified position for making pleasantries. Chris started things off, saying, “So do you have a lot of kids like Blink who are a handful?” Mrs. S.’s eyes grew wide. Her hands fell to the table. “Oh, god, no,” she said, “No. I’ve taught kindergarten for twenty years and I’ve never had a child like Blink in my classroom.” She paused and went for the kill, uttering the words that would suck all the air out of the room for me. “It’s not normal,” she said.
I had walked into the parent-teacher conference thinking (well, hoping, for I am nothing if not an optimist) that I would hear what a brilliant child I have. Instead I heard that his screams are so chilling that other teachers have come running into the room to see what terrible emergency was transpiring. Oh, just Blink needing to transition from one activity to another. Or Blink objecting to “Funnercize.” (Though, I have to admit I was with him on that one in spirit).
And thus began the delicate dance with Mrs. S., in which she suggested we take Blink to the pediatrician, being very careful not to actually voice any specific concerns about his development, while I gently pushed back to inquire what her specific concerns were. Alas, we were both skilled dance partners, and got nowhere. So I took a deep breath, summoned up some courage and asked her in a shaky voice, “Do you think we should get the special education department involved?”
“Oh no,” Mrs. S. replied, explaining that, incredibly, nothing was interfering with Blink's academics — he was doing wonderfully with reading and math, after all. Furthermore, the behavior, the very behavior that she had just spent so much time telling me wasn’t normal, wasn’t severe enough to warrant special education involvement. She did pause to add in a foreboding note, “Expectations will get higher in first, second, and third grades. At that point, perhaps special education will be appropriate.”
Blink, blink.
I stared at this woman, not comprehending how someone could blithely tell me that yes, my son was clearly floundering in kindergarten, but no, there was nothing the school wanted to do about it. Maybe Blink just needed to fail miserably every day for a few more years before anyone would actually, oh, I don’t know, do anything about it.
And yet, under my indignation, deep down, part of me was a tad relieved. The fact that I had voiced the dreaded words “special education” and been rebuffed must mean my child was simply highly sensitive and unique, yes, unique. Perhaps he was “gifted.” He would grow out of the screaming. The gulf between his intellectual development and his social emotional development would even out on his own and soon this would be a distant memory.
Part II:
I sent Blink off to kindergarten with a cheery smile affixed to my face, a balloon of fear and hope inflating my chest, causing me to hold my breath.
We made it about a week-and-a-half into the school year before I got a call from Mrs. S., the veteran kindergarten teacher. She was calling, she said, to let me know that Blink was having a little difficulty adjusting to kindergarten and she wondered if I just might have some advice on how to cope with Blink's screaming fits.
And at that very moment, the fairy tale I had carefully constructed in my head— you know, the one in which Blink ran off to school with a smile on his face and we all lived happily ever after — crumbled into a million tiny pieces.
A month later, we had parent teacher conferences. My husband I walked into the bright, orderly kindergarten classroom and sat down on kindergarten-sized chairs, awkwardly trying to assume a composed and dignified position for making pleasantries. Chris started things off, saying, “So do you have a lot of kids like Blink who are a handful?” Mrs. S.’s eyes grew wide. Her hands fell to the table. “Oh, god, no,” she said, “No. I’ve taught kindergarten for twenty years and I’ve never had a child like Blink in my classroom.” She paused and went for the kill, uttering the words that would suck all the air out of the room for me. “It’s not normal,” she said.
I had walked into the parent-teacher conference thinking (well, hoping, for I am nothing if not an optimist) that I would hear what a brilliant child I have. Instead I heard that his screams are so chilling that other teachers have come running into the room to see what terrible emergency was transpiring. Oh, just Blink needing to transition from one activity to another. Or Blink objecting to “Funnercize.” (Though, I have to admit I was with him on that one in spirit).
And thus began the delicate dance with Mrs. S., in which she suggested we take Blink to the pediatrician, being very careful not to actually voice any specific concerns about his development, while I gently pushed back to inquire what her specific concerns were. Alas, we were both skilled dance partners, and got nowhere. So I took a deep breath, summoned up some courage and asked her in a shaky voice, “Do you think we should get the special education department involved?”
“Oh no,” Mrs. S. replied, explaining that, incredibly, nothing was interfering with Blink's academics — he was doing wonderfully with reading and math, after all. Furthermore, the behavior, the very behavior that she had just spent so much time telling me wasn’t normal, wasn’t severe enough to warrant special education involvement. She did pause to add in a foreboding note, “Expectations will get higher in first, second, and third grades. At that point, perhaps special education will be appropriate.”
Blink, blink.
I stared at this woman, not comprehending how someone could blithely tell me that yes, my son was clearly floundering in kindergarten, but no, there was nothing the school wanted to do about it. Maybe Blink just needed to fail miserably every day for a few more years before anyone would actually, oh, I don’t know, do anything about it.
And yet, under my indignation, deep down, part of me was a tad relieved. The fact that I had voiced the dreaded words “special education” and been rebuffed must mean my child was simply highly sensitive and unique, yes, unique. Perhaps he was “gifted.” He would grow out of the screaming. The gulf between his intellectual development and his social emotional development would even out on his own and soon this would be a distant memory.
Maybe.
Back to School in Three Short Snapshots
Blink started a new school this year. As I've mentioned before, it's a dramatic change from his old school. He's gone from an environment dominated by students with special needs to a mainstream environment. The expectations are much higher at his new school. Here, staff tend to ask themselves, "Is this something Blink can do?" and if the answer is yes, that is the expectation. Clearly, my not-so-little monkey is dealing with a pretty Titanic-sized transition right now. So, how's it going? Here are three snapshots:
1. Blink is playing tag with other kids on the playground at recess! And, as far as I know, enjoying it immensely.
2. "There are no bullies at my new school." This statement says it all, doesn't it?
3. The wonderful autism teacher, checking in with me after a bumpy first few days, told me that Blink is a creative, funny, wonderful boy and it's her mission to make sure that everyone in the school sees that in him.
I'm happy.
1. Blink is playing tag with other kids on the playground at recess! And, as far as I know, enjoying it immensely.
2. "There are no bullies at my new school." This statement says it all, doesn't it?
3. The wonderful autism teacher, checking in with me after a bumpy first few days, told me that Blink is a creative, funny, wonderful boy and it's her mission to make sure that everyone in the school sees that in him.
I'm happy.
Tuesday, September 7, 2010
The Waiting List, Part I
This week, I'm going to share some writing I'm doing about the confusing, maddening, oh let's face it, terrible time period leading up to Blink's diagnosis of Asperger's Syndrome. Those of you in the trenches know what I'm referring to: the time period in which you can no longer deny that something isn't quite right, but the answers (let alone solutions) remain all too elusive.
Here's part I of the installment:
THE WAITING LIST
I came home from work one hot August day to find Katie, eternally cheerful Katie, who was our summer nanny, with a frown on her face. Having just moved back to Minneapolis from the east coast and transitioned from telecommuting from home to a nearly full-time job at the office, we had been in a bit of a child care crunch. To this day, I grow a bit uncomfortable when I say the words “our nanny” because the truth is, I’m just not the kind of person who has a nanny. But when you have a challenging/spirited/what-euphemism-should-we-insert-here kind of five-year-old as well as a one-year-old who will not nap without nursing, one’s last-minute child care options are limited.
Katie had come via word-of-mouth recommendations through the much loftier social circles my boss ran in. With an elementary education certification in hand, Katie was studying to become a Montessori teacher. She had seemingly endless patience. Patience, I’m afraid, my darling firstborn had just about exhausted on that Thursday in August that she cornered me with a frown.
With a serious face, Katie shared a laundry list of the day’s infractions. Blink had yelled at her many times, repeatedly telling her that he hated her and she was stupid. At the park, he threw pebbles at his baby sister, hitting her in the face. When Katie told him to stop, he looked her in the eye and did it again. Twice. Wisely deciding it was time to exit the park, Katie got the kids to her car. The car that Blink then hit with a stick. Stick removed, he hit Katie while she was buckling him into the car. Oh, it was bad. After each incident, I would cringe and steel myself as I realized that Katie wasn’t through yet, oh no. Apparently, my five-year-old son also refused to go use the bathroom and declared that he would simply pee in his pants instead. And did.
Here's part I of the installment:
THE WAITING LIST
I came home from work one hot August day to find Katie, eternally cheerful Katie, who was our summer nanny, with a frown on her face. Having just moved back to Minneapolis from the east coast and transitioned from telecommuting from home to a nearly full-time job at the office, we had been in a bit of a child care crunch. To this day, I grow a bit uncomfortable when I say the words “our nanny” because the truth is, I’m just not the kind of person who has a nanny. But when you have a challenging/spirited/what-euphemism-should-we-insert-here kind of five-year-old as well as a one-year-old who will not nap without nursing, one’s last-minute child care options are limited.
Katie had come via word-of-mouth recommendations through the much loftier social circles my boss ran in. With an elementary education certification in hand, Katie was studying to become a Montessori teacher. She had seemingly endless patience. Patience, I’m afraid, my darling firstborn had just about exhausted on that Thursday in August that she cornered me with a frown.
With a serious face, Katie shared a laundry list of the day’s infractions. Blink had yelled at her many times, repeatedly telling her that he hated her and she was stupid. At the park, he threw pebbles at his baby sister, hitting her in the face. When Katie told him to stop, he looked her in the eye and did it again. Twice. Wisely deciding it was time to exit the park, Katie got the kids to her car. The car that Blink then hit with a stick. Stick removed, he hit Katie while she was buckling him into the car. Oh, it was bad. After each incident, I would cringe and steel myself as I realized that Katie wasn’t through yet, oh no. Apparently, my five-year-old son also refused to go use the bathroom and declared that he would simply pee in his pants instead. And did.
And on and on and on.
I do believe my son’s antics were the subject of many a dramatic story for Katie to bring out at family gatherings, always punctuated with the last line, “And that’s when I decided I would never, ever, nanny again.”
I was mortified by Katie’s somber descriptions, of course. But more chilling were her parting words. “I’m worried about how Blink is going to do in kindergarten. I’ve spent a lot of time in classrooms and I’m just really concerned about how Blink is going to cope with the expectations they will have for behavior.” I don’t recall her coming straight out and saying the words, “I am concerned about your son’s social development,” but the gravity of her warning was clear.
My eyes wide with concern, embarrassment, and fear, I nodded silently as Katie continued. “It’s not just today,” she said. “He does this kind of thing on the playground a lot. Blink always wants to play Titanic and when the other kids don’t understand his game, or don’t want to play it, he starts yelling insults.” Oh. How charming. Oh. Oh dear. I thanked Katie, apologized one more time, and ushered her out the door just before the tears started spilling down my cheeks.
Just a few weeks earlier, I had taken Blink for his five-year-old check up with our new pediatrician. He was at his charming and talkative best and Dr. Irvin turned to me and said wryly, “Clearly he has no social development problems!” I just smiled weakly, searching for a way to say, “Well, actually...” but ultimately it was so much more comfortable to sit there and pretend it was true than to tell her my concerns right in front of Blink.
With just a few weeks before kindergarten was to begin, I wasn’t sure what to make of Katie’s warnings. Kind-hearted friends counseled that Blink was a sensitive child (true), who was reacting to a cross-country move (true) and adjusting to spending more time in child care (also true). I couldn’t shake the feeling there was more at hand, but at the same time I wasn’t quite ready to face it, and honestly, I wasn’t at all clear on what “facing it” would actually entail. All I knew, deep down, was that “normal” kids didn’t act this way and I seemed to be spending an awful lot of time wringing my hands and saying things like, “I don’t know what to do.”
The only prudent course of action, it seemed to me at the time, was to hold my breath and hope kindergarten went well...
I do believe my son’s antics were the subject of many a dramatic story for Katie to bring out at family gatherings, always punctuated with the last line, “And that’s when I decided I would never, ever, nanny again.”
I was mortified by Katie’s somber descriptions, of course. But more chilling were her parting words. “I’m worried about how Blink is going to do in kindergarten. I’ve spent a lot of time in classrooms and I’m just really concerned about how Blink is going to cope with the expectations they will have for behavior.” I don’t recall her coming straight out and saying the words, “I am concerned about your son’s social development,” but the gravity of her warning was clear.
My eyes wide with concern, embarrassment, and fear, I nodded silently as Katie continued. “It’s not just today,” she said. “He does this kind of thing on the playground a lot. Blink always wants to play Titanic and when the other kids don’t understand his game, or don’t want to play it, he starts yelling insults.” Oh. How charming. Oh. Oh dear. I thanked Katie, apologized one more time, and ushered her out the door just before the tears started spilling down my cheeks.
Just a few weeks earlier, I had taken Blink for his five-year-old check up with our new pediatrician. He was at his charming and talkative best and Dr. Irvin turned to me and said wryly, “Clearly he has no social development problems!” I just smiled weakly, searching for a way to say, “Well, actually...” but ultimately it was so much more comfortable to sit there and pretend it was true than to tell her my concerns right in front of Blink.
With just a few weeks before kindergarten was to begin, I wasn’t sure what to make of Katie’s warnings. Kind-hearted friends counseled that Blink was a sensitive child (true), who was reacting to a cross-country move (true) and adjusting to spending more time in child care (also true). I couldn’t shake the feeling there was more at hand, but at the same time I wasn’t quite ready to face it, and honestly, I wasn’t at all clear on what “facing it” would actually entail. All I knew, deep down, was that “normal” kids didn’t act this way and I seemed to be spending an awful lot of time wringing my hands and saying things like, “I don’t know what to do.”
The only prudent course of action, it seemed to me at the time, was to hold my breath and hope kindergarten went well...
Monday, August 23, 2010
Summer Round Up
In one week, Blink will be starting at his new school. At the outset of this summer, which was three times the length of previous summer breaks since the move from a year-round school program to a traditional schedule, I anticipated I would be clawing my eyeballs out and begging for mercy by the end of the summer. (Yeah, we didn't begin summer on a good note...)
But really, I'm a little wistful. It's been nice having Blink around in the background while I work (attended by our amazing PCA...he wasn't being neglected!). No doubt I am looking forward to a quiet house next week, but it has really been a great summer.
Just as I'd hoped and wished, Blink has decompressed quite a bit from the stressfest that was the end of his school year at the old school. We've worked hard to get his anxiety under control. Looking back, I see that I haven't mentioned one critical piece of the puzzle here: we started seeing a new specialist for medication management and over the past 6 weeks, we've really increased his Prozac dose. And it's helping.
Today, for instance, we were running late to get out the door in time for his social skills group. Blink had gone upstairs to get socks and gotten distracted. When he came back sock-less, I suggested (ok, maybe snapped) that he just wear his sandals. Ordinarily this would have become quite the power struggle. Today? With just a little bit of exasperation, he said, "Oh, alriiiiiiiight." I am pretty sure I stopped and blinked, myself, I was so shocked!
I'm nervous about the greater demands of mainstreaming in the school year ahead. And excited at the possibilities. I will be holding my breath for the first few weeks, to be sure.
But really, I'm a little wistful. It's been nice having Blink around in the background while I work (attended by our amazing PCA...he wasn't being neglected!). No doubt I am looking forward to a quiet house next week, but it has really been a great summer.
Just as I'd hoped and wished, Blink has decompressed quite a bit from the stressfest that was the end of his school year at the old school. We've worked hard to get his anxiety under control. Looking back, I see that I haven't mentioned one critical piece of the puzzle here: we started seeing a new specialist for medication management and over the past 6 weeks, we've really increased his Prozac dose. And it's helping.
Today, for instance, we were running late to get out the door in time for his social skills group. Blink had gone upstairs to get socks and gotten distracted. When he came back sock-less, I suggested (ok, maybe snapped) that he just wear his sandals. Ordinarily this would have become quite the power struggle. Today? With just a little bit of exasperation, he said, "Oh, alriiiiiiiight." I am pretty sure I stopped and blinked, myself, I was so shocked!
I'm nervous about the greater demands of mainstreaming in the school year ahead. And excited at the possibilities. I will be holding my breath for the first few weeks, to be sure.
Thursday, August 12, 2010
Strategies and Teaching Moments
Don't you love it when a strategy works? Tonight was Happy Hour Playdate (best invention ever) among my friends. Picture about a dozen kids running amok while adults sip drinks on the patio and nosh on delicious food. Blink is the only child over the age of 5, however, which makes for a challenging situation. He does really well with children a year or two younger, but a gaggle of his little sister's peers? That's kind of his nightmare.
The first Happy Hour Playdate, Blink had to be carried out kicking and screaming. It wasn't until he was agitated that I'd found a quiet place for him.
After that, I admit, I arranged for him to spend extra time with his father and avoided it altogether. But that wasn't possible tonight, so we had a few strategies in place.
We went over the fact that the rule is, if you have a problem you get your mother. And try to remember how young everyone is.
I had him ask the hostess if there was a quiet room he could use as his space. We brought a book and an ipod.
It totally worked! He did a great job. There were a few, um, teaching moments. Like when he wanted to ask everyone not to eat the shrimp. (As of today, he's a vegetarian?!) Or when he thought the girl who was trying to impress him was being mean and hated him. (What?! That's not how she can impress me. I have a list of things she can do to impress me. Like eating a worm. That would impress me.)
But no meltdowns! No altercations. Go Blink!
(Full disclosure: I did also let him play with my iPhone a lot more than I usually do.)
The first Happy Hour Playdate, Blink had to be carried out kicking and screaming. It wasn't until he was agitated that I'd found a quiet place for him.
After that, I admit, I arranged for him to spend extra time with his father and avoided it altogether. But that wasn't possible tonight, so we had a few strategies in place.
We went over the fact that the rule is, if you have a problem you get your mother. And try to remember how young everyone is.
I had him ask the hostess if there was a quiet room he could use as his space. We brought a book and an ipod.
It totally worked! He did a great job. There were a few, um, teaching moments. Like when he wanted to ask everyone not to eat the shrimp. (As of today, he's a vegetarian?!) Or when he thought the girl who was trying to impress him was being mean and hated him. (What?! That's not how she can impress me. I have a list of things she can do to impress me. Like eating a worm. That would impress me.)
But no meltdowns! No altercations. Go Blink!
(Full disclosure: I did also let him play with my iPhone a lot more than I usually do.)
Monday, August 9, 2010
Two Conversations
Two recent conversations with Blink stick in my mind.
The first was when we were on vacation and I was beyond frustrated with Blink. Out of sheer frustration, I said something like, "Sometimes it seems like you only care about other people's feelings when it directly affects you. I'm not raising you to be like that." His response? "Well I guess you are." I'm pretty sure I burst into tears at that point. I mean, what do you do? I'm haunted by it.
The second conversation was this morning. We were just chatting and Blink called me out for using imprecise language. It was rude, though I knew that wasn't his intent. We were all in good moods, so I said very calmly and evenly, "Blink, you know, that sounded kind of rude." He sighed and said, "People think everything I say is rude." I nodded and explained maybe it's not always what he says, but how he says it, adding that people like nice voices. He sighed again and said, "I just have no idea how everybody does that." So true! It was insightful.
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