Sometimes I feel like I'm not a very good autism mother. This is different from feeling like I'm not a very good mother, which I also sometimes feel, but that's another -- several other -- blog posts.
Autism mothers are different. They schlep their kids here and there for therapy and social groups. They have their state reps on speed dial and march on the State House whenever there's important autism legislation in the works. They become advocates in the best sense of the word -- fighting not only for their children, but for the larger, more noble cause of improving the lot of those with autism, raising money, educating, finding a cure.
Some autism moms do all that and write passionately and eloquently about it, too, like Susan Senator and Judith Ursitti, both of whom I admire very much.
I've done my share of schlepping. I've even emailed my government representatives now and again. But it is beyond my capability and strength -- and truthfully, beyond my interest -- to take on Autism with a capital A.
It's not that I don't care. I want to make the world a better place, too. I even have a bit of a platform, with the writing opportunities I've gotten over the past year or so. But I can't seem to throw all my energies into Autism with a capital A. I just don't have it in me to write consistently about the big picture.
Of course, because autism is part of my life, it does find its way into my writing. I welcome the opportunity to educate and even to inspire, if my words can do that for someone. I guess I'm just struggling with feeling like I ought to do more for the cause, and I'm resistant to that.
Maybe if I mostly write about my family as if it's normal, it will feel more normal to me. Maybe if I don't acknowledge the autism elephant in the room, it won't really be there. Maybe if I crack a joke about it or pass off some of my kids' behaviors as mere idiosyncrasies, others will let it slide and not think that there's anything different about my children, or me.
The truth is that I just get tired of it. When it's a part of my day-to-day existence, it becomes too hard to read every single issue of the Schafer Autism Report. I don't want to take my children to a special community outing for kids on the spectrum. I cannot bring myself or my children to participate in yet another research study.
I just want autism to leave me alone.
Thank goodness there are other autism moms out there who won't leave it alone.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Friday, December 12, 2008
Thursday, November 27, 2008
Changes
All week, we've been telling the kids about the guests we're having for Thanksgiving: my mom, my brother and his family, all coming from Rochester; and my sister and her husband, who live locally. The kids have been very excited about it, especially about playing with their cousin.
Yesterday we got a call from my mom with some bad news: they had a flat tire, just outside of Syracuse. Fortunately, they were able to get not only one but two new tires, and replace a tie rod, and get back on the road. Unfortunately, the delay meant they wouldn't be here for dinner, as planned.
Abby, who already was revving a little higher than normal because of the half-day at school, had a really hard time coping with the change. She had heard Earl talking with my mom, and we casually mentioned the delay to all three kids. We later noticed that Abby was getting more and more agitated, and saying the types of things she often does when upset:
"I don't want them to come."
"I'll make Thanksgiving dinner myself."
"I don't even like Mairi (her cousin)."
"I hate Thanksgiving. I don't want to see Grammie."
Of course, none of these things are true. We couldn't really talk her down very well, either, so I decided the direct approach might work better. I sat all three kids down on the couch.
"OK, kids, I want to tell you about a change. Are you ready? Here comes a change."
("OK, it's just a little change," said Abby.)
"First of all," I continued, "here's what is NOT changing. Our guests are still coming. They will be here for Thanksgiving dinner tomorrow. We will still see Grammie, Uncle Keith, Auntie Jen and Mairi. They will be here.
"Now, here's what's different. They thought they would be here for dinner tonight. They are later than they thought they would be. They are still coming but they won't get here until after you are in bed. You will see them tomorrow morning."
They all thought about that for a minute. Timmy nodded, shrugged and slid off the couch. Brian asked a couple of follow-up questions, but seemed okay, too.
But poor Abby. She understood what was happening, but still had such a hard time. She didn't throw a tantrum or anything like that, but she did more perseverative behavior than usual, and was hovering a couple of inches off the ground until bedtime.
It's not clear to me whether it was the change itself that caused this behavior, or (more likely) dealing with the disappointment that came with the change. Abby is much better at handling negative emotions than she used to be, but it's still a struggle sometimes.
The strangest thing was that Abby initiated a conversation with Earl on the way home from school yesterday -- before she knew about the change -- about how she doesn't do the "back and forth" type of talk any more. This refers to the "I want to/I don't want to" perseveration, and also her penchant for saying exactly the opposite of what she really means.
So we wonder: why did she decide to talk about that, out of the blue? My theory was that she was feeling a little unsettled from the change in the school schedule, and maybe she felt the "back and forth" urge coming on and was trying to talk herself out of it.
She's becoming more self-aware all the time, and we're really proud of her for that. But sometimes, changes are just too much. Hopefully, today she'll feel better, and will be able to enjoy our guests and move beyond yesterday's challenges. We'll all be thankful for that.
Yesterday we got a call from my mom with some bad news: they had a flat tire, just outside of Syracuse. Fortunately, they were able to get not only one but two new tires, and replace a tie rod, and get back on the road. Unfortunately, the delay meant they wouldn't be here for dinner, as planned.
Abby, who already was revving a little higher than normal because of the half-day at school, had a really hard time coping with the change. She had heard Earl talking with my mom, and we casually mentioned the delay to all three kids. We later noticed that Abby was getting more and more agitated, and saying the types of things she often does when upset:
"I don't want them to come."
"I'll make Thanksgiving dinner myself."
"I don't even like Mairi (her cousin)."
"I hate Thanksgiving. I don't want to see Grammie."
Of course, none of these things are true. We couldn't really talk her down very well, either, so I decided the direct approach might work better. I sat all three kids down on the couch.
"OK, kids, I want to tell you about a change. Are you ready? Here comes a change."
("OK, it's just a little change," said Abby.)
"First of all," I continued, "here's what is NOT changing. Our guests are still coming. They will be here for Thanksgiving dinner tomorrow. We will still see Grammie, Uncle Keith, Auntie Jen and Mairi. They will be here.
"Now, here's what's different. They thought they would be here for dinner tonight. They are later than they thought they would be. They are still coming but they won't get here until after you are in bed. You will see them tomorrow morning."
They all thought about that for a minute. Timmy nodded, shrugged and slid off the couch. Brian asked a couple of follow-up questions, but seemed okay, too.
But poor Abby. She understood what was happening, but still had such a hard time. She didn't throw a tantrum or anything like that, but she did more perseverative behavior than usual, and was hovering a couple of inches off the ground until bedtime.
It's not clear to me whether it was the change itself that caused this behavior, or (more likely) dealing with the disappointment that came with the change. Abby is much better at handling negative emotions than she used to be, but it's still a struggle sometimes.
The strangest thing was that Abby initiated a conversation with Earl on the way home from school yesterday -- before she knew about the change -- about how she doesn't do the "back and forth" type of talk any more. This refers to the "I want to/I don't want to" perseveration, and also her penchant for saying exactly the opposite of what she really means.
So we wonder: why did she decide to talk about that, out of the blue? My theory was that she was feeling a little unsettled from the change in the school schedule, and maybe she felt the "back and forth" urge coming on and was trying to talk herself out of it.
She's becoming more self-aware all the time, and we're really proud of her for that. But sometimes, changes are just too much. Hopefully, today she'll feel better, and will be able to enjoy our guests and move beyond yesterday's challenges. We'll all be thankful for that.
Friday, November 14, 2008
Physician, heal thyself
Lately, I've been telling Brian when he gets "stuck" on a topic. The clinical word for this behavior is perseveration, and it's a common behavior among people with high-functioning autism.
Most of the time, when I need to remind Brian to talk about another topic, we're in the van, and he's thinking about the Cars movie and starts talking about losing tires, wanting to make a pit stop, wondering if I'm going to squeal the tires, etc. I usually let him ask a few questions and then say, "Hey buddy, don't get stuck" and change the subject.
He turned the tables on me today. There we were in the van, and he started talking about pit stops, and I told him he was getting stuck.
"You're getting stuck!" he shouted at me.
"Me?" I replied, in surprise.
"You're stuck on telling me I'm getting stuck!"
Most of the time, when I need to remind Brian to talk about another topic, we're in the van, and he's thinking about the Cars movie and starts talking about losing tires, wanting to make a pit stop, wondering if I'm going to squeal the tires, etc. I usually let him ask a few questions and then say, "Hey buddy, don't get stuck" and change the subject.
He turned the tables on me today. There we were in the van, and he started talking about pit stops, and I told him he was getting stuck.
"You're getting stuck!" he shouted at me.
"Me?" I replied, in surprise.
"You're stuck on telling me I'm getting stuck!"
Thursday, September 11, 2008
September 11
All three children are in bed, after a fairly smooth evening. Smooth, that is, until Abby started talking about the fact that today is a "holiday."
We've never told her about what happened on September 11, 2001, when she was but a month old. She's too young to understand, but who really understands it, anyway? Who can fathom that buildings that were standing aren't there any more? That people who walked the earth ceased to exist, in an instant, or an hour?
Abby started talking about a holiday and about a plane crash. I couldn't really understand from her how it was addressed in school, or what exactly was said. I asked her if she wanted to know more about it, and she said yes. So, in straightforward terms, I told her that planes crashed into buildings that day, and a lot of people died.
That unleashed a torrent of questions: What buildings? What planes? Was I on the plane? How did it happen? Was anyone we loved on the planes? Was there a fire? Did the fire department have to come? Why did the buildings fall down?
Then: Planes are terrible. I hate buildings. I'm never going into a building again. When I'm on a plane I'm going to take over the plane. I'm going to kill everyone on the plane. I feel like I'm going to die. I don't want to die until I'm a really, really old lady. Being alive is tough.
I thought I could gently explain what happened seven years ago today, but soon learned that there's no soft-pedaling that can take away the horror, even without mentioning the word terrorism.
I should have known better, should have remembered that Abby's ability to handle things emotionally lags far behind her intellectual curiosity. I should have known that showing her a photo of the World Trade Center towers wouldn't have helped her understand. Some things just aren't made better by being more concrete, even for a kid on the autism spectrum.
Just a few minutes ago, she called me up to her room: "Mommeeeee! Mommy! Come up here, quick!"
I went upstairs and sat on the edge of her bed.
"Was Grammie Moore on the plane?" she asked me.
"No, honey, we saw Grammie Moore a couple of weeks ago, remember?"
"Oh yes. Was I on the plane?" she continued, worried.
"No, honey. You were right here with Mommy and Daddy."
"Oh, good. I was just worried about that. I wish I didn't ask about the planes," she said.
Me too, I thought. "It's OK, honey," I soothed. "You're here with us and we're all safe, together."
"That's good," she said. "I feel better now."
I wonder what she'll dream about tonight. Will she see planes bursting into flames? Buildings falling down? How will her mind come to grips with this new knowledge of hers, and file it away?
We said a prayer before I went back downstairs: Now I lay me down to sleep, I pray the Lord my soul to keep. May angels watch me through the night, until I wake in the morning light. Amen.
"There," I said to her. "Your guardian angels will watch over you while you sleep, and keep you safe."
"And God," she added. "They're the good ones."
We've never told her about what happened on September 11, 2001, when she was but a month old. She's too young to understand, but who really understands it, anyway? Who can fathom that buildings that were standing aren't there any more? That people who walked the earth ceased to exist, in an instant, or an hour?
Abby started talking about a holiday and about a plane crash. I couldn't really understand from her how it was addressed in school, or what exactly was said. I asked her if she wanted to know more about it, and she said yes. So, in straightforward terms, I told her that planes crashed into buildings that day, and a lot of people died.
That unleashed a torrent of questions: What buildings? What planes? Was I on the plane? How did it happen? Was anyone we loved on the planes? Was there a fire? Did the fire department have to come? Why did the buildings fall down?
Then: Planes are terrible. I hate buildings. I'm never going into a building again. When I'm on a plane I'm going to take over the plane. I'm going to kill everyone on the plane. I feel like I'm going to die. I don't want to die until I'm a really, really old lady. Being alive is tough.
I thought I could gently explain what happened seven years ago today, but soon learned that there's no soft-pedaling that can take away the horror, even without mentioning the word terrorism.
I should have known better, should have remembered that Abby's ability to handle things emotionally lags far behind her intellectual curiosity. I should have known that showing her a photo of the World Trade Center towers wouldn't have helped her understand. Some things just aren't made better by being more concrete, even for a kid on the autism spectrum.
Just a few minutes ago, she called me up to her room: "Mommeeeee! Mommy! Come up here, quick!"
I went upstairs and sat on the edge of her bed.
"Was Grammie Moore on the plane?" she asked me.
"No, honey, we saw Grammie Moore a couple of weeks ago, remember?"
"Oh yes. Was I on the plane?" she continued, worried.
"No, honey. You were right here with Mommy and Daddy."
"Oh, good. I was just worried about that. I wish I didn't ask about the planes," she said.
Me too, I thought. "It's OK, honey," I soothed. "You're here with us and we're all safe, together."
"That's good," she said. "I feel better now."
I wonder what she'll dream about tonight. Will she see planes bursting into flames? Buildings falling down? How will her mind come to grips with this new knowledge of hers, and file it away?
We said a prayer before I went back downstairs: Now I lay me down to sleep, I pray the Lord my soul to keep. May angels watch me through the night, until I wake in the morning light. Amen.
"There," I said to her. "Your guardian angels will watch over you while you sleep, and keep you safe."
"And God," she added. "They're the good ones."
Monday, August 11, 2008
Back to normal
The parties are over; the celebrated houseguest gone. Dad and Mom arrived on Thursday and headed home this morning. It was a good visit, and a treat to have Dad staying with me for the first time in years. (Mom stayed with my sister. Mom and Dad are divorced, although obviously friendly enough to share the 400-mile trip from Rochester to Boston.)
The weekend was very nice; a good "real" birthday for Abby on Friday, followed by her "friend" party on Saturday. She wanted a High School Musical theme party, so we cranked up the soundtrack tunes, moved the coffeetable and let the girls all do their best dance moves to get the party started. Some of them were really good, and they all knew the words to sing along, too. Very cute.
We did a simple craft (no other kind ever happens in my house, actually) and then I told them the East High cafeteria was open for pizza, which I had made. The rest of the party took care of itself -- presents, cake, and a little time to play outside before it was time to send them on their way with their crafts and goody bags. It was fun, and better than last year's ballerina party -- probably because it was shorter.
I was very proud of Abby. She really connected with her friends, through the common bond of craziness about High School Musical. Toward the end, she was forgetting the social graces; when it was time to bid her last guest goodbye, she decided to do the bear walk down the hall in the opposite direction. Fortunately, the mom understands kids with ASDs and wasn't fazed in the least.
Of course, I still made Abby come back and tell her friend goodbye!
On Sunday we had a combined family party for Abby and Timmy, who will be 3 on the 21st. As always, everyone was so generous with gifts and yummy food for the party. We are truly blessed. Grandparents, godparents, aunts and uncles -- it was so good to see everyone, and to celebrate Abby and Timmy with them.
Kids with both sets of grandparents, August 10, 2008
Left to right: Mom, Bobby, Brian, Judy, Abby, Dad, Timmy
Thursday, July 31, 2008
Movie and a dinner
We took the kids to see Wall-E today. A good movie. Not the best I've seen, but the animation was amazing, and the kids liked it, until it got too long.
A few observations:
A few observations:
- I spent the first 45 minutes or so wondering how Abby -- an extremely verbal child -- was doing with this essentially non-verbal movie. Timmy was all over the social cues -- "He's happy! She's angry!" -- but I wonder if Abby was just lost in the trash skyscrapers and clicking little bug's antics.
- It wasn't as loud as I expected it to be. Meaning, I didn't need my earplugs.
- It could have been more concise, especially in the beginning.
- The ending credits were the best part of the movie, for the amazing and beautiful art history lesson.
Then we went out to dinner, at Outback, a place none of us had visited before. It was all right -- the kids could get what they wanted, and we could, too.
The best part was that the only mishap was when Abby's styrofoam cup inexplicably developed a tear, showering her with apple juice. She was remarkably composed about it, however.
No crazy bathroom runs. No perceived vomiting threats. No lost silverware under the table. No stimming or flapping or anything too conspicuous. Just Brian standing up from time to time on the seat of the booth, Timmy eating mostly french fries, and gentle showers of apple juice.
Tuesday, April 22, 2008
Quick! Call Supernanny!
Lately I've been feeling like the worst mother ever. How else can you explain my being unable to control -- even partially -- Abby's behavior?
When we last left our favorite six-year-old, I was wondering how I would find her mood at school pick-up time on Thursday. Update: she was fine. She was also fine the next day, mostly. And most of Saturday.
And then it was Sunday: the first day without CCD. And the day before Earl was leaving for Canada for a quick trip to check out the cottage. And the day of a playdate that had to be postponed from Saturday.
Sunday morning saw her as out of control as she's ever been. Yesterday's and today's mornings saw that, too. Her therapist (whom I called for help) asked me what it looked like, and it looked like this: Abby yelling, screaming, flailing, flopping around; hitting herself, hitting me, even trying to bite me; slamming doors, throwing books and toys; Brian and Timmy staring in shock and looking at me for cues about how to handle it.
Besides remaining calm, I'm afraid I didn't have much to offer the situation. Abby worked through it, each time. But in general, these behavioral displays correspond with the emotional and social development of a toddler, not a six-and-a-half year-old. And I can't deal with it like I'd deal with a toddler, namely, picking the child up and removing her from the situation, because the situation is inside her, and she's too big for me to pick her up, anyway.
I see myself on an episode of Supernanny, where that voluptuous Mary Poppins would descend on our house, cluck her tongue, and upbraid me for all the things I'm doing wrong. Then, after breaking down in front of millions of viewers aghast at my lack of parenting skills or even common sense, I'd plead with her to straighten the whole mess out. And she would. Right?
No. What I really need is SuperBCBA. Or Superhypnotist. Or Super-PDD-curer.
And what I've got is: me. And Earl. And Abby's fabulous therapist, and a concerned school team, and sympathetic friends and family. And lately, they haven't been enough.
When we last left our favorite six-year-old, I was wondering how I would find her mood at school pick-up time on Thursday. Update: she was fine. She was also fine the next day, mostly. And most of Saturday.
And then it was Sunday: the first day without CCD. And the day before Earl was leaving for Canada for a quick trip to check out the cottage. And the day of a playdate that had to be postponed from Saturday.
Sunday morning saw her as out of control as she's ever been. Yesterday's and today's mornings saw that, too. Her therapist (whom I called for help) asked me what it looked like, and it looked like this: Abby yelling, screaming, flailing, flopping around; hitting herself, hitting me, even trying to bite me; slamming doors, throwing books and toys; Brian and Timmy staring in shock and looking at me for cues about how to handle it.
Besides remaining calm, I'm afraid I didn't have much to offer the situation. Abby worked through it, each time. But in general, these behavioral displays correspond with the emotional and social development of a toddler, not a six-and-a-half year-old. And I can't deal with it like I'd deal with a toddler, namely, picking the child up and removing her from the situation, because the situation is inside her, and she's too big for me to pick her up, anyway.
I see myself on an episode of Supernanny, where that voluptuous Mary Poppins would descend on our house, cluck her tongue, and upbraid me for all the things I'm doing wrong. Then, after breaking down in front of millions of viewers aghast at my lack of parenting skills or even common sense, I'd plead with her to straighten the whole mess out. And she would. Right?
No. What I really need is SuperBCBA. Or Superhypnotist. Or Super-PDD-curer.
And what I've got is: me. And Earl. And Abby's fabulous therapist, and a concerned school team, and sympathetic friends and family. And lately, they haven't been enough.
Friday, April 11, 2008
Marathon article and more
I interviewed four runners for a piece on the upcoming Boston Marathon for the Milton Times. All those years of reading Runners' World paid off! Here's the story with two photos.I had to laugh when I saw the Times yesterday. At right is the front page photo, featuring Brian! He's pictured with some of his preschool classmates and their wonderful teacher, Mary Beth Callahan, who is being honored with a professional recognition award for her excellent work in early childhood education. Brian is in the green striped shirt in the front...not looking at the camera, of course.
I had another story in the Times about a recent teen drinking forum, which I can't find on the website. And Earl was quoted in an article about a recent school committee meeting. Too bad Abby and Timmy weren't in the paper somehow!
Friday, April 4, 2008
Response from a friend
My high school friend Pam, who lives in Arkansas, sent me this response to my last post, and I got a big chuckle out of it for a few reasons (see below.)
Pam wrote:
I think the whole situation sounds pretty "normal" to me. We hear Spongebob being repeated around our house and don't always realize that is where it comes from until we turn the tv on the next time either. My friend's daughters occasionally get the incredible urge to yell "It's my money and I want it now!" across the house. From the opposite side of the house, the other daughter responds by repeating "It's MY money and I want it now!". (Do you have that commercial in MA? Because if you don't you can't appreciate the humor in the thought of them saying that). It's just more obvious that they are repeating tv and it's much less purposeful than Brian's comment. Maybe that line just struck him and he seized the opportunity to use it since he wasn't in the mood to stop what he was doing at the time...??? The whole scenario suits the comment and maybe he felt it summed up how he felt about the inconvenience?? After all, someone had to say "gag me with a spoon" before everyone else repeated it.
My reasons for chuckling:
Pam wrote:
I think the whole situation sounds pretty "normal" to me. We hear Spongebob being repeated around our house and don't always realize that is where it comes from until we turn the tv on the next time either. My friend's daughters occasionally get the incredible urge to yell "It's my money and I want it now!" across the house. From the opposite side of the house, the other daughter responds by repeating "It's MY money and I want it now!". (Do you have that commercial in MA? Because if you don't you can't appreciate the humor in the thought of them saying that). It's just more obvious that they are repeating tv and it's much less purposeful than Brian's comment. Maybe that line just struck him and he seized the opportunity to use it since he wasn't in the mood to stop what he was doing at the time...??? The whole scenario suits the comment and maybe he felt it summed up how he felt about the inconvenience?? After all, someone had to say "gag me with a spoon" before everyone else repeated it.
My reasons for chuckling:
- Of course, she's right -- all kids repeat what they hear. How else would they learn to talk?
- She's right again, in that Brian used that phrase ("Okay, but it's not as easy as it looks") more or less appropriately -- even if it was rather unexpected, and therefore pretty funny.
- And the biggest thing that made me laugh: I am forever commenting on my friend Naomi's blog about the differences between our worlds because two of my kids are on the autism spectrum. It's nice, and plenty ironic, to get a comment that essentially points out that my world is the same in many ways, too.
Thursday, April 3, 2008
A funny interruption
Brian was holding his beloved bear, Kaloo, yesterday after dinner. Suddenly he threw Kaloo to the floor in disgust, and said in frustration, "I have to use the toilet."
His exasperation at the inconvenience was obvious. He didn't want to do it, but couldn't avoid it.
Our lovely babysitter, J., went to turn on the bathroom light for him, and told him he was all set.
"OK," conceded Brian. "But it's not as easy as it looks."
And now, the inevitable autism addendum (15 minutes later):
I just turned on Caillou for Brian and Timmy, who love to watch episodes on demand. This episode was about a friend who plays the tuba. Caillou asked if he could try, and the friend said (can you guess?)
"OK, but it's not as easy as it looks."
It would have been so wonderful if Brian had come out with that phrase on his own. It's still funny, but I have to say that hearing that line on TV and knowing that Brian still has some delayed echolalia burst my happy mommy bubble.
His exasperation at the inconvenience was obvious. He didn't want to do it, but couldn't avoid it.
Our lovely babysitter, J., went to turn on the bathroom light for him, and told him he was all set.
"OK," conceded Brian. "But it's not as easy as it looks."
And now, the inevitable autism addendum (15 minutes later):
I just turned on Caillou for Brian and Timmy, who love to watch episodes on demand. This episode was about a friend who plays the tuba. Caillou asked if he could try, and the friend said (can you guess?)
"OK, but it's not as easy as it looks."
It would have been so wonderful if Brian had come out with that phrase on his own. It's still funny, but I have to say that hearing that line on TV and knowing that Brian still has some delayed echolalia burst my happy mommy bubble.
Thursday, March 13, 2008
Sunshine in the house
Last week I posted that I was becoming increasingly concerned about Abby. She had been very anxious, and that anxiety had been erupting whenever she was home, in the form of serial meltdowns. Meltdowns in the morning, meltdowns in the evening, meltdowns at suppertime.
Of course, she could not articulate what was bothering her so much. My junior-varsity shrink persona surmised that it was concern over her dance class, which we had switched to a better time and environment for her, coupled with grief over Camille. Maybe things were extra-tough at school; maybe she was getting sick. We didn't know. We just put on the kid gloves and hoped for the best every morning.
And then, a note came home from school, saying that she seemed anxious about the elevator in the building, specifically the emergency buttons on the elevator. Her in-class ABA support person, M., hit on the idea of writing a social story about elevators (why didn't I think of that?) and sent it home with her on Thursday.
Who knew a few pages of elevator information could put such an efficient end to the turmoil in our house?
Abby kept the elevator story with her for the better part of two days, reading it and sharing information with anyone who would listen. And the anxiety evaporated, taking the meltdowns with it.
I marveled to T., Abby's therapist, that Abby could have been so worked up about elevators. And T., in her wisdom, pointed out that sometimes kids on the spectrum funnel their anxiety into one particular topic. Abby's world of worry was stuck in the elevator at school, and the story M. wrote opened the doors and let it out on another floor somewhere. We haven't seen it since.
Abby's been very happy at home for about a week now, and it's been like sunshine in the house. I know it can't last forever, but for now, we are all basking in the glow.
Of course, she could not articulate what was bothering her so much. My junior-varsity shrink persona surmised that it was concern over her dance class, which we had switched to a better time and environment for her, coupled with grief over Camille. Maybe things were extra-tough at school; maybe she was getting sick. We didn't know. We just put on the kid gloves and hoped for the best every morning.
And then, a note came home from school, saying that she seemed anxious about the elevator in the building, specifically the emergency buttons on the elevator. Her in-class ABA support person, M., hit on the idea of writing a social story about elevators (why didn't I think of that?) and sent it home with her on Thursday.
Who knew a few pages of elevator information could put such an efficient end to the turmoil in our house?
Abby kept the elevator story with her for the better part of two days, reading it and sharing information with anyone who would listen. And the anxiety evaporated, taking the meltdowns with it.
I marveled to T., Abby's therapist, that Abby could have been so worked up about elevators. And T., in her wisdom, pointed out that sometimes kids on the spectrum funnel their anxiety into one particular topic. Abby's world of worry was stuck in the elevator at school, and the story M. wrote opened the doors and let it out on another floor somewhere. We haven't seen it since.
Abby's been very happy at home for about a week now, and it's been like sunshine in the house. I know it can't last forever, but for now, we are all basking in the glow.
Tuesday, March 11, 2008
The stars aligned
I was in my usual rush to take Abby to school yesterday, with Timmy in tow. Timmy climbed up into the van and his car seat, and I went to follow him, when suddenly my cranium met the vanium in a most unhappy way. I saw stars.
I sat on the floor of the van, stunned from the pain at the top of my head and the base of my neck. As I was getting in the side door, I had misjudged and had hit my head on the top of the door opening, with the full force of my legs propelling me forward. Ouch.
Of course, I started to cry. It really hurt. Timmy kept saying, "Mommy you OK? Mommy you OK?" I couldn't even talk.
Mommy tears set Abby off. She ran up the driveway and into the garage, a safe place to hide from an uncontrollable and upsetting situation for her. Thank God she didn't run into the street.
After a few minutes, I assured Timmy I was all right, and set off for the garage. I had to coax, cajole, and finally threaten to physically carry Abby to the van (although in my dazed state, there was no way I could have done that.) She was upset all the way to school, but we got there.
And she had the best day at school she's had in a long time. She came home with a note that said she earned all her stars in her behavior management program -- a first, or at least the first in a long, long time.
Maybe a little emotional catharsis in the morning freed her to concentrate better all day. Maybe it had nothing to do with it. But it's not an experiment I wish to repeat.
I sat on the floor of the van, stunned from the pain at the top of my head and the base of my neck. As I was getting in the side door, I had misjudged and had hit my head on the top of the door opening, with the full force of my legs propelling me forward. Ouch.
Of course, I started to cry. It really hurt. Timmy kept saying, "Mommy you OK? Mommy you OK?" I couldn't even talk.
Mommy tears set Abby off. She ran up the driveway and into the garage, a safe place to hide from an uncontrollable and upsetting situation for her. Thank God she didn't run into the street.
After a few minutes, I assured Timmy I was all right, and set off for the garage. I had to coax, cajole, and finally threaten to physically carry Abby to the van (although in my dazed state, there was no way I could have done that.) She was upset all the way to school, but we got there.
And she had the best day at school she's had in a long time. She came home with a note that said she earned all her stars in her behavior management program -- a first, or at least the first in a long, long time.
Maybe a little emotional catharsis in the morning freed her to concentrate better all day. Maybe it had nothing to do with it. But it's not an experiment I wish to repeat.
Friday, February 1, 2008
Dance the night away
I love to dance. Brian and Timmy love to dance (and play teddy-guitar along with the music.) Abby doesn't walk; she prances. So when I saw that Abby's school was hosting a family dance last night, I thought it would be a lot of fun. When I noticed that I could also get a pizza dinner for the kids at $1 a slice, I was sold.
We showed up a little early, just after the pizza arrived. We sat in the cafeteria (or "cap-e-teria," as Brian said) and ate our slices. Then it was dancing time.
The PTO had hired a DJ, complete with big speakers and colored lights. Kids were dancing with each other, with their parents, and by themselves. I brought my three out to the middle of the gym and helped them get started. The boys took off like they were on Dance Fever (does anyone remember that show?) and Abby needed some encouragement, but she did some dancing, too.
We had a great time for about 15 minutes. Then I noticed Abby looking a little dazed. I asked her what was wrong, and she said it was too loud and the lights were bothering her. I helped her turn her back to the lights, but she was getting upset. I brought her to the back of the gym; it didn't help. So I asked her if she wanted to go home, and she tearfully said yes.
I went to round up the boys, and when I got back to Abby, she was flapping her arms. She took a few deep breaths, but was getting more and more upset. I quickly shepherded everyone out into the hallway, and by the time we got to the car, Abby was calmer. We talked about how some people are just more sensitive to loud noise (and lights, she reminded me.) I said maybe we needed to bring earplugs the next time, but I don't really have a solution for the lights.
I had wanted to bring Abby to the dance as a social and recreational opportunity. I completely forgot about her sensory issues until I saw her having trouble. The boys don't have those issues; Brian was in his element and would have stayed and danced all night. Timmy's dance card was full, too.
I'm glad we tried it, but maybe Abby's social activities will have to be more subdued, at least for a while.
We showed up a little early, just after the pizza arrived. We sat in the cafeteria (or "cap-e-teria," as Brian said) and ate our slices. Then it was dancing time.
The PTO had hired a DJ, complete with big speakers and colored lights. Kids were dancing with each other, with their parents, and by themselves. I brought my three out to the middle of the gym and helped them get started. The boys took off like they were on Dance Fever (does anyone remember that show?) and Abby needed some encouragement, but she did some dancing, too.
We had a great time for about 15 minutes. Then I noticed Abby looking a little dazed. I asked her what was wrong, and she said it was too loud and the lights were bothering her. I helped her turn her back to the lights, but she was getting upset. I brought her to the back of the gym; it didn't help. So I asked her if she wanted to go home, and she tearfully said yes.
I went to round up the boys, and when I got back to Abby, she was flapping her arms. She took a few deep breaths, but was getting more and more upset. I quickly shepherded everyone out into the hallway, and by the time we got to the car, Abby was calmer. We talked about how some people are just more sensitive to loud noise (and lights, she reminded me.) I said maybe we needed to bring earplugs the next time, but I don't really have a solution for the lights.
I had wanted to bring Abby to the dance as a social and recreational opportunity. I completely forgot about her sensory issues until I saw her having trouble. The boys don't have those issues; Brian was in his element and would have stayed and danced all night. Timmy's dance card was full, too.
I'm glad we tried it, but maybe Abby's social activities will have to be more subdued, at least for a while.
Monday, January 28, 2008
Money, money, money
Money isn't everything, but it ranks right up there with oxygen.
-- Rita Davenport, motivational speaker and Arbonne International president
Money has been on my mind lately. Being married to a financial adviser, I have someone else to take care of the day-to-day fiscal operations of our family, and I like it that way, for the most part. But every so often, something that takes a lot of money bombs its way into my consciousness and I'm consumed by the particular financial conundrum it presents.
The latest is my discovery of a program I think would be very beneficial for Abby, my 6-year-old who has a mild form of autism. I'd love to have her take part, and am in the process of completing applications for participation and financial aid. But even if we were awarded some scholarship money for her to go, chances are we'd still need to come up with a few thousand dollars on our own.
I've been brainstorming ideas for coming up with some cash. Here's what I've thought of so far:
-- Rita Davenport, motivational speaker and Arbonne International president
Money has been on my mind lately. Being married to a financial adviser, I have someone else to take care of the day-to-day fiscal operations of our family, and I like it that way, for the most part. But every so often, something that takes a lot of money bombs its way into my consciousness and I'm consumed by the particular financial conundrum it presents.
The latest is my discovery of a program I think would be very beneficial for Abby, my 6-year-old who has a mild form of autism. I'd love to have her take part, and am in the process of completing applications for participation and financial aid. But even if we were awarded some scholarship money for her to go, chances are we'd still need to come up with a few thousand dollars on our own.
I've been brainstorming ideas for coming up with some cash. Here's what I've thought of so far:
- Writing until my fingers bleed. This was my initial plan, until I figured out that no amount of newspaper articles would create the kind of income I need to generate in the time frame. So that made me think (again) of...
- Magazines. A couple of weeks ago I wrote in this space that I would be writing a query letter, and then got sidetracked. But after a big nudge from a colleague today, I'm proud to say I did send off an article proposal to one magazine and am in the process of fine-tuning a query to another. Magazines pay more than newspapers, but I'm a pretty new freelancer, and it's a competitive world out there. Still, it doesn't hurt to try.
- Cake sales and yard sales. These ideas are courtesy of Diana, my hairdresser. I don't think I could rely on them to pay for the program entirely, but they might rake in a couple hundred bucks. Particularly if I baked for a week and then hauled all the possessions we no longer need out into the yard and ALSO had the goodies set up for purchase. But this sounds like an awful lot of work for the potential return.
- A benefit concert (benefiting me, of course, so I can pay for this program for Abby.) It's been seven years since I've given a voice recital, and I know so many more people now that I might be able to pull in a decent crowd and make some money, even after expenses. Of course, the kind of program I'd like to do wouldn't necessarily be a crowd-pleaser (an evening with Richard Strauss, anyone?) but if I did some of my favorite repertoire and some lighter stuff, like musical theater, it could work. Maybe. Can I realistically set aside the time to prepare for this, musically? If I'm also trying to pitch magazines and keep up with my other writing assignments?
- Putting ads on my blog. I need to check out other blogs to see how it looks, but this might be a painless way to generate a little money, too. Very little, I'm sure, but every dollar helps, right?
If anyone out there has any brainwaves on this subject, drop me a line. I'm open to suggestions.
Sunday, January 20, 2008
En vacances
I've just submitted that article I've been working on, so now I'm really on vacation. Kathleen and I have plans today to go out to lunch and then a Houston Symphony concert. We're hoping to get to the gym this morning, too -- something I really could use after the sumptuous snacky dinner we had last night. Freddy made me a glass of kir -- white wine from France with a little splash of blackberry liqueur. Delicious! And we had various puff-pastry hors d'oeuvres and foie gras (which I tried and didn't love) and chips and dip. And peanut butter cookies with Hershey's Kisses in the middle. This, after Kathleen's homemade Reubens for lunch. I'm going to be as big as Texas by the time I get back. But I'm enjoying it!
Abby participated in Patrick's recreational therapy yesterday, and had a good time. They played board games, and she got a little bossy ("Patrick, it's your turn now!") but it was nice to have some structured playtime, and good for both of them to practice their social interaction skills. We then ran some errands and Abby got to see a dog being groomed at Petco -- something her wonderful therapist had recommended, because Abby is so into playing dogs lately.
Houston is an interesting landscape. There are no zoning laws here, no planning boards, so many of the residential neighborhoods are subdivisions, which protect homeowners from having commercial development spring up next to them. Kathleen and Freddy live in a gated community, which is very nice. The houses are closer together than I would have imagined, with all this land down here. Smaller yards than I envisioned. But there's still a nice sense of privacy, with fences and the way the houses are angled in their cul-de-sac.
There's an interesting opinion piece about urban planning and what it means for development and economic growth in today's Houston Chronicle. I'm not sure I agree with it, but it can certainly give readers an idea of the mindset of many Texans on this issue.
Abby participated in Patrick's recreational therapy yesterday, and had a good time. They played board games, and she got a little bossy ("Patrick, it's your turn now!") but it was nice to have some structured playtime, and good for both of them to practice their social interaction skills. We then ran some errands and Abby got to see a dog being groomed at Petco -- something her wonderful therapist had recommended, because Abby is so into playing dogs lately.
Houston is an interesting landscape. There are no zoning laws here, no planning boards, so many of the residential neighborhoods are subdivisions, which protect homeowners from having commercial development spring up next to them. Kathleen and Freddy live in a gated community, which is very nice. The houses are closer together than I would have imagined, with all this land down here. Smaller yards than I envisioned. But there's still a nice sense of privacy, with fences and the way the houses are angled in their cul-de-sac.
There's an interesting opinion piece about urban planning and what it means for development and economic growth in today's Houston Chronicle. I'm not sure I agree with it, but it can certainly give readers an idea of the mindset of many Texans on this issue.
Saturday, January 19, 2008
Deep in the heart of Texas
I'm here in sunny Houston, where it was the same temperature yesterday as in Boston. So much for a warm winter getaway! But it's a toasty feeling, basking in Kathleen and Freddy's hospitality in their spacious, gracious home.
Abby did wonderfully well on the trip. She listened to a couple of CDs, read books, and played ponies and Polly Pocket on the plane. She handled the airport, the people, the delay and everything else with aplomb. When the lovely gentleman who sat in our row commented on how well she did, it was all I could do to hold back from telling him, "and she has autism, too!" But I realized that he didn't know, couldn't tell, never would have guessed, and I didn't have to clue him in. A delicious feeling, to have a secret like that, and the luxury of keeping it.
Kathleen, Freddy and I went out to dinner last night, and left the kids with one of their regular babysitters, and again, Abby did great. I'm really proud of her.
I'm writing a piece with a deadline of Monday, and wasn't looking forward to working on it here. But I decided to get up early to write, as is my habit at home, and discovered I love it just as much on vacation as I do in real life. Mornings with coffee and words -- it doesn't get any better than that. Except when someone else makes the chocolate chip pancakes, for a change, and I get to eat them while they're still hot!
Abby did wonderfully well on the trip. She listened to a couple of CDs, read books, and played ponies and Polly Pocket on the plane. She handled the airport, the people, the delay and everything else with aplomb. When the lovely gentleman who sat in our row commented on how well she did, it was all I could do to hold back from telling him, "and she has autism, too!" But I realized that he didn't know, couldn't tell, never would have guessed, and I didn't have to clue him in. A delicious feeling, to have a secret like that, and the luxury of keeping it.
Kathleen, Freddy and I went out to dinner last night, and left the kids with one of their regular babysitters, and again, Abby did great. I'm really proud of her.
I'm writing a piece with a deadline of Monday, and wasn't looking forward to working on it here. But I decided to get up early to write, as is my habit at home, and discovered I love it just as much on vacation as I do in real life. Mornings with coffee and words -- it doesn't get any better than that. Except when someone else makes the chocolate chip pancakes, for a change, and I get to eat them while they're still hot!
Thursday, January 10, 2008
Maybe it's time
Recently, Abby's therapist, Earl and I have been thinking about whether it might be time to tell Abby about her diagnosis. This came up because of some self-esteem issues that are surfacing, most likely from Abby's emerging social awareness.
For example, the other day, Abby was upset and announced she wanted to put herself into the recycling. She then proceeded to say that no one at school likes the way she looks, and no one at school likes her. I asked her if anyone had told her so, and she said, "No, I just think it."
She had gone on a similar tirade a few months ago, when she said she wanted to throw herself in the trash, and then proceeded to go into the bathroom and stand in the wastebasket.
All this is very upsetting to me, and so I mentioned it to Abby's wonderful therapist. And her response was that maybe we should think about explaining to Abby why she feels different sometimes.
My first reaction was that she's too young and she'll probably obsess about it. I can just hear her saying now, in that sing-songy voice she sometimes uses, "I do that because I have autism!"
But after a conversation I had with her yesterday, I'm not so sure. I was bringing her home from OT, and she started singing a song -- something about a silent e. I asked her about it, and she said it was from the Starfall website. She then said she wasn't stimming, because if you sing songs from a computer it's not stimming.
I told her that stimming wasn't about where a song was from, and that if she was just singing a song because it was in her head and she liked it, it wasn't stimming, anyway. And she said, "It's OK as long as I don't stim on it."
So we talked a little about that. And then, I asked her, "Do you ever get stimmy at school?"
And she said, with shock and a silly Mommy! tone to her voice, "No, of course not! Because stimming is boring!"
I know that she's been working on social and conversational skills at school, like staying on topic and not going on and on about a subject (something she doesn't do that much, anyway.) And I see that she's becoming aware of what other people might think is a boring (or strange) behavior, even if her awareness is defined by rules at this point, rather than true theory of mind.
So maybe she is more aware of differences than I thought. Maybe knowledge, in this case, would be power for her, because she could more objectively recognize a behavior and modify it.
We're still thinking about whether, and when, to explain Abby's diagnosis to her, and will discuss it more with her therapist. And in the meantime, I hope we'll have more opportunities to talk like we did yesterday, in the car after OT.
For example, the other day, Abby was upset and announced she wanted to put herself into the recycling. She then proceeded to say that no one at school likes the way she looks, and no one at school likes her. I asked her if anyone had told her so, and she said, "No, I just think it."
She had gone on a similar tirade a few months ago, when she said she wanted to throw herself in the trash, and then proceeded to go into the bathroom and stand in the wastebasket.
All this is very upsetting to me, and so I mentioned it to Abby's wonderful therapist. And her response was that maybe we should think about explaining to Abby why she feels different sometimes.
My first reaction was that she's too young and she'll probably obsess about it. I can just hear her saying now, in that sing-songy voice she sometimes uses, "I do that because I have autism!"
But after a conversation I had with her yesterday, I'm not so sure. I was bringing her home from OT, and she started singing a song -- something about a silent e. I asked her about it, and she said it was from the Starfall website. She then said she wasn't stimming, because if you sing songs from a computer it's not stimming.
I told her that stimming wasn't about where a song was from, and that if she was just singing a song because it was in her head and she liked it, it wasn't stimming, anyway. And she said, "It's OK as long as I don't stim on it."
So we talked a little about that. And then, I asked her, "Do you ever get stimmy at school?"
And she said, with shock and a silly Mommy! tone to her voice, "No, of course not! Because stimming is boring!"
I know that she's been working on social and conversational skills at school, like staying on topic and not going on and on about a subject (something she doesn't do that much, anyway.) And I see that she's becoming aware of what other people might think is a boring (or strange) behavior, even if her awareness is defined by rules at this point, rather than true theory of mind.
So maybe she is more aware of differences than I thought. Maybe knowledge, in this case, would be power for her, because she could more objectively recognize a behavior and modify it.
We're still thinking about whether, and when, to explain Abby's diagnosis to her, and will discuss it more with her therapist. And in the meantime, I hope we'll have more opportunities to talk like we did yesterday, in the car after OT.
Wednesday, January 9, 2008
Call in the reinforcements
"I wrote for twelve years and collected 250 rejection slips before getting any fiction published, so I guess outside reinforcement isn't all that important to me."
--Lisa Alther, author
Unlike Lisa, I'm all about reinforcement, both as the reinforcer and the reinforcee. Of course, there's the ABA approach to managing my kids' behaviors -- m&m, anyone? There's my piano teaching, too: the Suzuki method relies heavily on reinforcing small successes, very similar to ABA. And we all work for the reinforcement of a paycheck.
But a beginning freelancer doesn't get a big paycheck from anyone, so the reinforcers have to come in other ways. Certainly, a byline is better than an m&m, any day. And recognition from friends and colleagues feels wonderful, not to mention the occasional email response from a random reader, or a nibble from a new editor.
While the phone call from the magazine editor last week was wonderfully reinforcing, I've also been obsessing a little about it. I haven't heard anything more from her, despite my having sent her several story ideas and another complete submission within 24 hours after the call. I'm feeling slightly sad about it, even though I'm also telling myself that there's still hope; editors are very busy and I can follow up (gently) in a couple of days. But that hole I shot in my foot isn't getting any smaller.
So along with the obsessing comes the analyzing, and I've been wondering why I'm so panicked about this. Yes, it's a prestigious magazine, and yes, it has a huge readership. It pays very well and I will jump at the chance to be published there, if and when another chance comes. But the sun does not rise and set on this one publication. There are other books on the rack.
So I broke open my Writer's Market book yesterday, for the first time in months. Last August I had marked a few magazines I had in mind, but hadn't done anything about them because I didn't have very many clips. But now, I have quite a few published articles, and I'm thinking about putting out some feelers. And it might be a good time to do it, since I'm not drowning in assignments at the moment.
So today I will query a magazine or two, and hope that some reinforcement comes out of it eventually. And in the meantime, I'll be proud of myself for doing it. Maybe I'll even have an m&m.
--Lisa Alther, author
Unlike Lisa, I'm all about reinforcement, both as the reinforcer and the reinforcee. Of course, there's the ABA approach to managing my kids' behaviors -- m&m, anyone? There's my piano teaching, too: the Suzuki method relies heavily on reinforcing small successes, very similar to ABA. And we all work for the reinforcement of a paycheck.
But a beginning freelancer doesn't get a big paycheck from anyone, so the reinforcers have to come in other ways. Certainly, a byline is better than an m&m, any day. And recognition from friends and colleagues feels wonderful, not to mention the occasional email response from a random reader, or a nibble from a new editor.
While the phone call from the magazine editor last week was wonderfully reinforcing, I've also been obsessing a little about it. I haven't heard anything more from her, despite my having sent her several story ideas and another complete submission within 24 hours after the call. I'm feeling slightly sad about it, even though I'm also telling myself that there's still hope; editors are very busy and I can follow up (gently) in a couple of days. But that hole I shot in my foot isn't getting any smaller.
So along with the obsessing comes the analyzing, and I've been wondering why I'm so panicked about this. Yes, it's a prestigious magazine, and yes, it has a huge readership. It pays very well and I will jump at the chance to be published there, if and when another chance comes. But the sun does not rise and set on this one publication. There are other books on the rack.
So I broke open my Writer's Market book yesterday, for the first time in months. Last August I had marked a few magazines I had in mind, but hadn't done anything about them because I didn't have very many clips. But now, I have quite a few published articles, and I'm thinking about putting out some feelers. And it might be a good time to do it, since I'm not drowning in assignments at the moment.
So today I will query a magazine or two, and hope that some reinforcement comes out of it eventually. And in the meantime, I'll be proud of myself for doing it. Maybe I'll even have an m&m.
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