Tonight as we were getting ready for bed, I decided to throw a little pretend-play chaos at Bud. I climbed up onto his stool at the sink and announced, "I'm ready to brush my teeth, Mom!"
"No, I'm not Mom," he said. "I'm Bud."
"I'm pretending," I said. "You be Mom and I'll be Bud. I'm ready to brush my teeth, Mom!"
Bud paused, considered the situation, and developed a strategy before he spoke.
"Say, Bud?" he asked.
"Yes?" I replied, eagerly awaiting the rest of his question.
"Can you be Mom?"
Tuesday, January 31, 2006
Humbled
I'm humbled and overwhelmed by the outpouring of support and the depth of understanding that followed my last post. Thank you all. I'm sorry that you understand so well; but I really am thankful that we've all found each other.
Sunday, January 29, 2006
Stealth grief
Today during the coffee hour after our church service, an older man I'm very fond of approached me and said, "I was watching you during the service. I'm going to give you the same advice I give to my daughters when they need it: it's time to take a deep breath."
He didn't elaborate, and I didn't ask him to. I thanked him for the advice, and acknowledged its wisdom and timeliness. He told me it was the sort of wisdom that comes with age, and he smiled and walked away as my throat tightened and my eyes pooled with tears.
So there it was. I'd wondered where it was. I'd been fooling myself for the past few days into thinking that it must be packed away in a box marked "The Past," but apparently I'd been carrying it right out in the open the whole time.
I call it "stealth grief." It's the phase of grieving that gets the least amount of attention and airtime. It's what happens when the grief is no longer a gaping open wound that you couldn't hide if you wanted to, when you have gotten through the aching, screaming pain, and when the good days finally - and by far - outnumber the bad. It's stealthy because you don't always see it coming, and because it emerges in new and different ways that you don't always recognize.
At least that's how it happens for me. Sometimes I don't see it coming because it pops up out of the blue - like when I hear that Julia Roberts has given birth to healthy twins, or when a woman in her blissful first pregnancy asks me if an amniocentesis hurts, or when people talk about their children's bond as siblings. Other times, I know it might be coming because of a date on the calendar - Mother's Day, for example. Or January 27.
Eight years ago on January 27 I had a baby girl. She was born with severe spina bifida and hydrocephalus when I was about 18 weeks pregnant and she was too small to survive outside my body.
Seven years ago on January 27 I found out that I was pregnant again. I later found out that I was carrying twins, later that one of the twins had mild spina bifida and hydrocephalus, later that the affected twin had died at full-term in utero, and later that the surviving twin had autism.
As you might imagine, for the past eight years January has been a difficult month. At first, the grief was right there on the surface, easy to identify and impossible to conceal. I talked, I cried, I wrote, I read, and grieved and grieved and grieved until some time had passed and the open wound began to heal. But the subsequent Januaries have been trickier: I spend the better part of the month each year wondering how the anniversary will affect me this time. Will this be a wracking-sob year? Or a reflective-but-peaceful year? Or will this be a stealth year, when grief slips on a disguise and makes me think it's passed me by, only to jump out and grab me when I least expect it?
I never grieved Bud's autism in the way that I read about people grieving after getting a diagnosis. I understand what people experience - the "death" of the dream of the neurotypical child you thought you had, and the adjustment to the reality of the wonderfully complex child you actually have. Maybe it's because there was not a startling "moment of diagnosis" for Bud, but rather a slow-paced, evolutionary unfolding of it. I'm not sure. Whatever the reason, the autism itself has never been a source of grief for me.
Bud's diagnosis did affect me in a different way, though; it affected me in a three-strikes-and-you're-out-of-the-baby-making-business sort of way. When Bud's brother died, the fear of spina bifida was daunting. We suddenly went from having a 1 in 1000 risk of having a subsequent pregnancy affected by it to a 1 in 20 risk. The idea that the risk was too great to ever try again was overwhelming. For a while. But somewhere, on some level, there was a competing thought: 1 in 20 means that there is a 19 in 20 chance that a subsequent baby would not have spina bifida. That thought floated around through Bud's toddler years, and I imagined that a day would come when I would pull it down and have a good look at it.
Before that day arrived, we discovered that Bud had autism. Since then, the reality has set in: a subsequent baby has an increased risk of spina bifida and of autism. Bud needs all of the time and attention and care that we can muster already. We would struggle to have time and attention for another child, even if that child were healthy and neurotypical. And the chances are great that the child would not be.
Bud will be our only living child. I have known that for quite some time. Known it. But, it seems, that stealthy creature grief has been lurking in the shadows for a while, getting caught in my peripheral vision but ducking around corners right before I've turned around to get a better look, making me wonder if my imagination was getting the best of me and there was nothing out there after all, slowly getting closer until - WHAM.
Wham. Out of nowhere, someone in church calls to my attention the things I have chosen not to see, and I suddenly understand why the blogs that have resonated most with me recently have been the sad ones; I recognize that the tightness and ache in my neck and shoulders is probably not bursitis after all; I become aware of the sensation in my body I had not even acknowledged - the one that starts somewhere behind my eyes and travels down to about my navel and feels like a blend of being bone-weary tired and of getting stuck in mid-sigh, unable to take it back and unable to complete it.
It seems that in this stealth year - the one in which my 40th birthday looms large on the horizon - grief has slipped on a new identity. I am not specifically grieving the loss of my daughter or the loss of my son. Instead, I am grieving my long-imagined idea of family, the one in which I have a gaggle of children whom I adore, and who adore each other. I am grieving the relationship that Bud will never have with a sibling. I am grieving the presence of the one person who will always be there for him, even when his father and I can no longer be.
And yet, even as I grieve, I can find the pockets of comfort. I can see the ways that the babies I knew so briefly have shaped my life so completely. I recognize the role they play in making me a better mother to Bud, in helping me to appreciate things about him that I might otherwise forget to notice.
And I experience more frequently and more acutely, in those fuzzy moments between awake and asleep as I huddle together with my wolf pack, the comfort that comes from the absolute certainty that one-plus-one-plus-one equals five, that there is a warmth we have generated that extends far beyond us, that there are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.
And so, I take the advice of my wise friend at church, and I breathe,
in,
and out,
my inhales and exhales in harmony and counter-point with the rest of my wolf pack. My family. We breathe, together and apart, and we huddle closer as time passes and the calendar, once again, allows us to move forward into February.
He didn't elaborate, and I didn't ask him to. I thanked him for the advice, and acknowledged its wisdom and timeliness. He told me it was the sort of wisdom that comes with age, and he smiled and walked away as my throat tightened and my eyes pooled with tears.
So there it was. I'd wondered where it was. I'd been fooling myself for the past few days into thinking that it must be packed away in a box marked "The Past," but apparently I'd been carrying it right out in the open the whole time.
I call it "stealth grief." It's the phase of grieving that gets the least amount of attention and airtime. It's what happens when the grief is no longer a gaping open wound that you couldn't hide if you wanted to, when you have gotten through the aching, screaming pain, and when the good days finally - and by far - outnumber the bad. It's stealthy because you don't always see it coming, and because it emerges in new and different ways that you don't always recognize.
At least that's how it happens for me. Sometimes I don't see it coming because it pops up out of the blue - like when I hear that Julia Roberts has given birth to healthy twins, or when a woman in her blissful first pregnancy asks me if an amniocentesis hurts, or when people talk about their children's bond as siblings. Other times, I know it might be coming because of a date on the calendar - Mother's Day, for example. Or January 27.
Eight years ago on January 27 I had a baby girl. She was born with severe spina bifida and hydrocephalus when I was about 18 weeks pregnant and she was too small to survive outside my body.
Seven years ago on January 27 I found out that I was pregnant again. I later found out that I was carrying twins, later that one of the twins had mild spina bifida and hydrocephalus, later that the affected twin had died at full-term in utero, and later that the surviving twin had autism.
As you might imagine, for the past eight years January has been a difficult month. At first, the grief was right there on the surface, easy to identify and impossible to conceal. I talked, I cried, I wrote, I read, and grieved and grieved and grieved until some time had passed and the open wound began to heal. But the subsequent Januaries have been trickier: I spend the better part of the month each year wondering how the anniversary will affect me this time. Will this be a wracking-sob year? Or a reflective-but-peaceful year? Or will this be a stealth year, when grief slips on a disguise and makes me think it's passed me by, only to jump out and grab me when I least expect it?
I never grieved Bud's autism in the way that I read about people grieving after getting a diagnosis. I understand what people experience - the "death" of the dream of the neurotypical child you thought you had, and the adjustment to the reality of the wonderfully complex child you actually have. Maybe it's because there was not a startling "moment of diagnosis" for Bud, but rather a slow-paced, evolutionary unfolding of it. I'm not sure. Whatever the reason, the autism itself has never been a source of grief for me.
Bud's diagnosis did affect me in a different way, though; it affected me in a three-strikes-and-you're-out-of-the-baby-making-business sort of way. When Bud's brother died, the fear of spina bifida was daunting. We suddenly went from having a 1 in 1000 risk of having a subsequent pregnancy affected by it to a 1 in 20 risk. The idea that the risk was too great to ever try again was overwhelming. For a while. But somewhere, on some level, there was a competing thought: 1 in 20 means that there is a 19 in 20 chance that a subsequent baby would not have spina bifida. That thought floated around through Bud's toddler years, and I imagined that a day would come when I would pull it down and have a good look at it.
Before that day arrived, we discovered that Bud had autism. Since then, the reality has set in: a subsequent baby has an increased risk of spina bifida and of autism. Bud needs all of the time and attention and care that we can muster already. We would struggle to have time and attention for another child, even if that child were healthy and neurotypical. And the chances are great that the child would not be.
Bud will be our only living child. I have known that for quite some time. Known it. But, it seems, that stealthy creature grief has been lurking in the shadows for a while, getting caught in my peripheral vision but ducking around corners right before I've turned around to get a better look, making me wonder if my imagination was getting the best of me and there was nothing out there after all, slowly getting closer until - WHAM.
Wham. Out of nowhere, someone in church calls to my attention the things I have chosen not to see, and I suddenly understand why the blogs that have resonated most with me recently have been the sad ones; I recognize that the tightness and ache in my neck and shoulders is probably not bursitis after all; I become aware of the sensation in my body I had not even acknowledged - the one that starts somewhere behind my eyes and travels down to about my navel and feels like a blend of being bone-weary tired and of getting stuck in mid-sigh, unable to take it back and unable to complete it.
It seems that in this stealth year - the one in which my 40th birthday looms large on the horizon - grief has slipped on a new identity. I am not specifically grieving the loss of my daughter or the loss of my son. Instead, I am grieving my long-imagined idea of family, the one in which I have a gaggle of children whom I adore, and who adore each other. I am grieving the relationship that Bud will never have with a sibling. I am grieving the presence of the one person who will always be there for him, even when his father and I can no longer be.
And yet, even as I grieve, I can find the pockets of comfort. I can see the ways that the babies I knew so briefly have shaped my life so completely. I recognize the role they play in making me a better mother to Bud, in helping me to appreciate things about him that I might otherwise forget to notice.
And I experience more frequently and more acutely, in those fuzzy moments between awake and asleep as I huddle together with my wolf pack, the comfort that comes from the absolute certainty that one-plus-one-plus-one equals five, that there is a warmth we have generated that extends far beyond us, that there are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.
And so, I take the advice of my wise friend at church, and I breathe,
in,
and out,
my inhales and exhales in harmony and counter-point with the rest of my wolf pack. My family. We breathe, together and apart, and we huddle closer as time passes and the calendar, once again, allows us to move forward into February.
Thursday, January 26, 2006
What, that again?
A difficult night falling asleep. A request for water. A call for one more cuddle. And then a singsong "Mo - om!"
"What is it, Bud?"
"I always keep sleeping!"
"Yes, that's good, honey. You're supposed to be sleeping!"
Pause.
"I already sleeped!"
Sure, he may like routine and predictability, but really - must the poor boy sleep every night?
"What is it, Bud?"
"I always keep sleeping!"
"Yes, that's good, honey. You're supposed to be sleeping!"
Pause.
"I already sleeped!"
Sure, he may like routine and predictability, but really - must the poor boy sleep every night?
Wednesday, January 25, 2006
One thing leads to another
This week Bud had one of those days you never want to end.
He looked up from his supper, glanced out the window, and was dismayed to see that night had fallen and it had gotten dark.
"Oh no," he lamented. "Bed is starting!"
He looked up from his supper, glanced out the window, and was dismayed to see that night had fallen and it had gotten dark.
"Oh no," he lamented. "Bed is starting!"
Tuesday, January 24, 2006
She's a hit!
I have posted previously about how much I adore Bud's teacher, Mrs. H. Now you get a chance to see why.
This afternoon, following the hitting incident, I gave Bud some time to unwind after we got home from school, then said "Bud, I'd like to hear about what happened at school today."
Much to my surprise he said, "I hit."
"Who did you hit?"
"I hit Mrs. H."
We talked about how Mrs. H. felt about being hit (angry and sad), and I asked him if he thought he might hit again tomorrow at school. He said "no," so we talked about what else he could if he got angry. Here's what we came up with: use his words, clap his hands, take a breath. And then we practiced together fake-angry-face to fake-angry-face: "I feel angry." CLAP. Breathe in ... breathe out.
Bud grabbed onto it, and even recounted it to Nana a couple of hours later, so I sent an e-mail to Mrs. H. so she could use it as a starting point at school tomorrow. A short time later I got this fabulous reply, which she has kindly agreed to let me post:
Hi there - first let me preface this with that fact that I am still in my "processing" stage of the day. It's when I spend my "chore time" reflecting on what has happened in the day and what I need to do, or not do. I will apologize right out front, because I will be doing some of my processing "outloud", and you can certainly chose to ignore any or all of it.
Bud. Bud is an ever evolving child, no different , in so many ways, as the children I have watched evolve for the last 27 years...I started young ;) . Yet, he is so vastly different, as has been each child with whom I have worked within the spectrum. Bud is Bud, and there is no escaping that. His evolution hinges on both where he falls on a particular day within the spectrum, and where he is developmentally. I am not an expert, I am a practitioner - my practice is observing children, loving them, encouraging, and nudging them....all in the name of learning.
Bud's hitting response seems to me to stem from different avenues. It is a new tool which he has discovered, and now must learn how to use. It was a matter of time, I believe, before he discovered the "power" of hitting/kicking. With this action there is power, and response. It appears that the notion of these actions was activated by a recent video, but again I believe it was only a matter of time. The slight changes in his daily routine could have an impact on this new behavior, (specialist schedule changes, you on the couch), but in the long run, these small changes have not impacted him in the past - I know, it could now.
The issue at hand for me is not "should I address this", but rather, "how should we all address this?" There are a couple of issues at hand. First there is the actual hitting/kicking. Bud is brilliant in that he has chosen to adapt these inappropriate behaviors at perfectly appropriate times - when someone is in his "territory" (dollhouse, computers, cars. legos, my lap - especially when it's being occupied by another child in my room who is also on the spectrum), or when the world is not going "his way" (ie - I would rather just sit in front of the computer all day thank you Mrs. H., and please don't ask me to paint, draw, build, go to the bathroom, etc.).
With a child, not on the spectrum - these are daily, developmentally appropriate challenges - they just have quicker (easier?) access to coping tools. For these behaviors, we have developed a routine that appears to have worked very well: clear, consistent visual, non-verbal cues, clearly set/realistic expectations (when/then), declarative language, validation of feelings (Bud is angry/sad/worried. - "Yes". "Bud wants to shut down the computer." --"Yes"....(like everything else, I pick my battles - this is one of them. When he shuts down the computer, he thinks no one else should play on them.)
One of the first things I did was to read all the children the story, "If you're angry and you know it", and he loved it. Choices when you're angry were - walk away, tell a friend, stomp your feet, and >>>>take a breath...which we practiced a lot - sound familiar? I'll send the book home tomorrow. I have been trying to find a way to communicate my new expectations to Bud so that they will make sense to him. "Waiting and seeing" has never been my strong suit. Saying "No", or "That's not nice," just doesn't do it.
This leads to my next issue. I am not the only adult to come across Bud's path during the day. I spend a great deal of time advocating/instructing other adults in the optimal way to draw out the "real" Bud, and how to tease out all the "great stuff" in him. Fortunately, the majority of us are on the same page, so my job is easier. However, sometimes it takes just a moment of battle of wills - and it quickly becomes a lose/lose situation.
So here I am, still trying to figure out how I can follow Bud for the years to come, still trying to come up with the magic words which will help shape his behavior the way I want it to go (HA!), and keep him feeling like he is the bees knees, and the light in my heart that he is.
You know, a long time ago, I read somewhere that it takes saying something at least 500 times to a child to get it somewhat a part of their "working memory". Now, I know for a fact, I have spent the last two decades telling children in my house to load their own dishes...well over the 500 times mark - still not to total success. So, how many times am I willing to say - "Hitting/kicking hurts. Mrs. H. doesn't want Bud to hit."...I've got a lot of staying power.
Let me know what else you come up with, and I'll share this with the team. I'll talk to you tomorrow...so sorry so long winded! Get healthy! - Mrs. H.
Sigh. Don't you just love her?
This afternoon, following the hitting incident, I gave Bud some time to unwind after we got home from school, then said "Bud, I'd like to hear about what happened at school today."
Much to my surprise he said, "I hit."
"Who did you hit?"
"I hit Mrs. H."
We talked about how Mrs. H. felt about being hit (angry and sad), and I asked him if he thought he might hit again tomorrow at school. He said "no," so we talked about what else he could if he got angry. Here's what we came up with: use his words, clap his hands, take a breath. And then we practiced together fake-angry-face to fake-angry-face: "I feel angry." CLAP. Breathe in ... breathe out.
Bud grabbed onto it, and even recounted it to Nana a couple of hours later, so I sent an e-mail to Mrs. H. so she could use it as a starting point at school tomorrow. A short time later I got this fabulous reply, which she has kindly agreed to let me post:
Hi there - first let me preface this with that fact that I am still in my "processing" stage of the day. It's when I spend my "chore time" reflecting on what has happened in the day and what I need to do, or not do. I will apologize right out front, because I will be doing some of my processing "outloud", and you can certainly chose to ignore any or all of it.
Bud. Bud is an ever evolving child, no different , in so many ways, as the children I have watched evolve for the last 27 years...I started young ;) . Yet, he is so vastly different, as has been each child with whom I have worked within the spectrum. Bud is Bud, and there is no escaping that. His evolution hinges on both where he falls on a particular day within the spectrum, and where he is developmentally. I am not an expert, I am a practitioner - my practice is observing children, loving them, encouraging, and nudging them....all in the name of learning.
Bud's hitting response seems to me to stem from different avenues. It is a new tool which he has discovered, and now must learn how to use. It was a matter of time, I believe, before he discovered the "power" of hitting/kicking. With this action there is power, and response. It appears that the notion of these actions was activated by a recent video, but again I believe it was only a matter of time. The slight changes in his daily routine could have an impact on this new behavior, (specialist schedule changes, you on the couch), but in the long run, these small changes have not impacted him in the past - I know, it could now.
The issue at hand for me is not "should I address this", but rather, "how should we all address this?" There are a couple of issues at hand. First there is the actual hitting/kicking. Bud is brilliant in that he has chosen to adapt these inappropriate behaviors at perfectly appropriate times - when someone is in his "territory" (dollhouse, computers, cars. legos, my lap - especially when it's being occupied by another child in my room who is also on the spectrum), or when the world is not going "his way" (ie - I would rather just sit in front of the computer all day thank you Mrs. H., and please don't ask me to paint, draw, build, go to the bathroom, etc.).
With a child, not on the spectrum - these are daily, developmentally appropriate challenges - they just have quicker (easier?) access to coping tools. For these behaviors, we have developed a routine that appears to have worked very well: clear, consistent visual, non-verbal cues, clearly set/realistic expectations (when/then), declarative language, validation of feelings (Bud is angry/sad/worried. - "Yes". "Bud wants to shut down the computer." --"Yes"....(like everything else, I pick my battles - this is one of them. When he shuts down the computer, he thinks no one else should play on them.)
One of the first things I did was to read all the children the story, "If you're angry and you know it", and he loved it. Choices when you're angry were - walk away, tell a friend, stomp your feet, and >>>>take a breath...which we practiced a lot - sound familiar? I'll send the book home tomorrow. I have been trying to find a way to communicate my new expectations to Bud so that they will make sense to him. "Waiting and seeing" has never been my strong suit. Saying "No", or "That's not nice," just doesn't do it.
This leads to my next issue. I am not the only adult to come across Bud's path during the day. I spend a great deal of time advocating/instructing other adults in the optimal way to draw out the "real" Bud, and how to tease out all the "great stuff" in him. Fortunately, the majority of us are on the same page, so my job is easier. However, sometimes it takes just a moment of battle of wills - and it quickly becomes a lose/lose situation.
So here I am, still trying to figure out how I can follow Bud for the years to come, still trying to come up with the magic words which will help shape his behavior the way I want it to go (HA!), and keep him feeling like he is the bees knees, and the light in my heart that he is.
You know, a long time ago, I read somewhere that it takes saying something at least 500 times to a child to get it somewhat a part of their "working memory". Now, I know for a fact, I have spent the last two decades telling children in my house to load their own dishes...well over the 500 times mark - still not to total success. So, how many times am I willing to say - "Hitting/kicking hurts. Mrs. H. doesn't want Bud to hit."...I've got a lot of staying power.
Let me know what else you come up with, and I'll share this with the team. I'll talk to you tomorrow...so sorry so long winded! Get healthy! - Mrs. H.
Sigh. Don't you just love her?
The hits just keep on comin'
I wrote previously about Bud's new attitude and about him telling people he was going to hit them. It seems he's started making good on his threats, and we have a bit of a hitting and kicking problem on our hands at school. Though he is probably dysregulated when the hitting happens, it appears to be the sort of dysregulation borne of not getting his own way, e.g., it is someone else's turn on the computer and he'd rather not hand it over just yet.
We know that scolding and demands for obedience don't work. Reminders to use "gentle hands and feet" and that "hitting hurts" yield a quick (if insincere) "sorry," but have no lasting impact.
A social story?
Some sort of reward chart?
I know we need to do something soon, before Bud settles into this pattern of dealing with his frustration by acting out physically, but I just don't know what.
So, friends in Autismland, got any words of advice?
We know that scolding and demands for obedience don't work. Reminders to use "gentle hands and feet" and that "hitting hurts" yield a quick (if insincere) "sorry," but have no lasting impact.
A social story?
Some sort of reward chart?
I know we need to do something soon, before Bud settles into this pattern of dealing with his frustration by acting out physically, but I just don't know what.
So, friends in Autismland, got any words of advice?
Monday, January 23, 2006
Somebody's been sleeping in my bed
Before I had a child, back when I was an expert on parenting, a friend of mine "confessed" to me that her three-year-old still climbed into bed with her and her husband almost every night. I don't remember how I responded, but I cringe at the thought that I probably launched into a no-nonsense directive on how to "Ferberize" the child. Internally, I was probably somewhat smug and thinking that she'd made her bed... so to speak.
A few years later we had Bud, and all my expertise about the "right" way to train a baby to sleep flew out the window. From the moment we settled into our room at the hospital, Bud made it clear that he was not interested in spending time in the bassinet. He wanted to be on a chest - mine or my husband's - where he could scoot in closely and sleep soundly. To be honest, my husband and I were as high-need for contact with Bud as he was with us. Bud's entry into the world had been bittersweet; his identical twin brother was stillborn. So, after nine months of having my heartbeat on one side of him and his brother's heartbeat on the other, I think Bud was frightened when he found himself all alone. And we parents, grieving the loss of one son, could not get close enough to the other.
So it seemed very natural that, upon arriving home from the hospital, we left the cribs empty and crowded together in our bed. The reference book I was using most, because it made the most intuitive sense to me, was The Baby Book by Dr. William Sears, who is a leading proponent of co-sleeping. Dr. Sears thought sharing our bed with Bud was a fine idea, and said that we could be sure that he would decide to leave our bed on his own when he was ready. All was happy for a short time, until everywhere we looked the news was full of warnings against co-sleeping. Having just lost one baby, I panicked at the thought of losing the other and immediately ordered this amazing product, which allowed us to continue to share sleep with Bud without taking any risks. When Bud outgrew the co-sleeper, we moved his crib into our room and he continued to sleep right next to me, though nearly every night he woke at some point and climbed in with us.
Dr. Sears wrote at length about the virtues of "nighttime parenting," and about responding to your child and being with your child to comfort him to sleep instead of trying to get him to self-sooth and learn to "cry it out". The philosophy made intuitive sense to me, especially in light of the loss we had all suffered. Crying it out might help Bud to learn to be more independent, I reasoned, but having just lost his twin he's probably already feeling more independent than he'd like to be. I feared that if I let him cry it out the message he'd hear would be "You're on your own, kid. Make it work." By "parenting" him to sleep, I hoped I was saying "You are never alone. You do not need to worry. I understand." I fully recognized that my need was as great as Bud's; when I returned to work full-time a few months later, my need to connect with Bud at night might even have been greater than his.
And so it continued, me cuddling with Bud until he fell asleep each night, then the three of us huddled together like a cozy little wolf pack, as the months turned into years, as we outgrew the Queen and purchased a King, until we woke one morning to find a big huge five-and-a-half year old in the middle. I consulted the Sears book again, looking for that chapter in which he assured me that my boy would be developmentally ready to move on to his own bed if we let him do it in his own time. Ah, yes, there it was. According to Dr. Sears, my son would be ready to do this when he reached the age of approximately ... three.
Ah.
I see. Dr. Sears had not accounted for autism when he made this prediction.
At that point I realized that this transition was probably not going to happen all on its own. I created a sticker chart - a cartoon picture of a boy sleeping in a bed, 5 empty squares for stickers, and then a picture of the payoff, a video that Bud knew darned well I wasn't buying any other way. I explained to him that any time he could fall asleep all by himself in his bed, he would get one sticker in the morning, and when he got 5 stickers we would buy the movie. I let him know that this was entirely up to him - if he wasn't ready to try, that was okay and he could try again another time. I also let him know that if he woke up in the night he could come into our room and he would still get his sticker.
It worked beautifully. I think it only took him 6 nights to get 5 stickers, and after a few more sticker charts (each a little longer than the one before) he was falling asleep on his own every night. But like clockwork, each and every night we heard a telltale thump-thump-thump as Bud padded from his room to ours, climbed up the foot of the bed, and squirmed himself into the middle.
We have just passed the one-year mark of Bud falling asleep on his own, and Bud still pads into our room every night at some point. Last night he climbed under the covers and sighed, "This is great." And the thing is, he's right; it is great. I don't have the words to explain it articulately yet, but on a gut level I just know that co-sleeping has made a difference for Bud. I don't think it has made his autism less severe; that's far too simplistic. But I think it has made us more connected. I think it has helped us to read each other better than we would have otherwise, to understand each other on an intuitive level.
In a chapter titled Our Most Important Discovery in her book Making Peace with Autism, Susan Senator described the pivotal moment when she began to understand Nat's need for connection. Kristina Chew at Autismland writes eloquently and frequently about her connection with her son Charlie. In blog after blog written by parents of children on the spectrum, I see examples of great things happening when they are able to connect. How we make the connections that yield success differs from family to family, but that we make the connection seems remarkably consistent. Like Lisa/Jedi, a fellow co-sleeper and recent addition to the world of autism bloggers, I believe that our connection with Bud was cemented with whispers and cuddles and giggles and snuffles amid pillows and flannel sheets.
And so, as Baby Bear said arriving home from his stroll in the woods to find Goldilocks in the house,
"Somebody's been sleeping in my bed ... and he's still there!"
A few years later we had Bud, and all my expertise about the "right" way to train a baby to sleep flew out the window. From the moment we settled into our room at the hospital, Bud made it clear that he was not interested in spending time in the bassinet. He wanted to be on a chest - mine or my husband's - where he could scoot in closely and sleep soundly. To be honest, my husband and I were as high-need for contact with Bud as he was with us. Bud's entry into the world had been bittersweet; his identical twin brother was stillborn. So, after nine months of having my heartbeat on one side of him and his brother's heartbeat on the other, I think Bud was frightened when he found himself all alone. And we parents, grieving the loss of one son, could not get close enough to the other.
So it seemed very natural that, upon arriving home from the hospital, we left the cribs empty and crowded together in our bed. The reference book I was using most, because it made the most intuitive sense to me, was The Baby Book by Dr. William Sears, who is a leading proponent of co-sleeping. Dr. Sears thought sharing our bed with Bud was a fine idea, and said that we could be sure that he would decide to leave our bed on his own when he was ready. All was happy for a short time, until everywhere we looked the news was full of warnings against co-sleeping. Having just lost one baby, I panicked at the thought of losing the other and immediately ordered this amazing product, which allowed us to continue to share sleep with Bud without taking any risks. When Bud outgrew the co-sleeper, we moved his crib into our room and he continued to sleep right next to me, though nearly every night he woke at some point and climbed in with us.
Dr. Sears wrote at length about the virtues of "nighttime parenting," and about responding to your child and being with your child to comfort him to sleep instead of trying to get him to self-sooth and learn to "cry it out". The philosophy made intuitive sense to me, especially in light of the loss we had all suffered. Crying it out might help Bud to learn to be more independent, I reasoned, but having just lost his twin he's probably already feeling more independent than he'd like to be. I feared that if I let him cry it out the message he'd hear would be "You're on your own, kid. Make it work." By "parenting" him to sleep, I hoped I was saying "You are never alone. You do not need to worry. I understand." I fully recognized that my need was as great as Bud's; when I returned to work full-time a few months later, my need to connect with Bud at night might even have been greater than his.
And so it continued, me cuddling with Bud until he fell asleep each night, then the three of us huddled together like a cozy little wolf pack, as the months turned into years, as we outgrew the Queen and purchased a King, until we woke one morning to find a big huge five-and-a-half year old in the middle. I consulted the Sears book again, looking for that chapter in which he assured me that my boy would be developmentally ready to move on to his own bed if we let him do it in his own time. Ah, yes, there it was. According to Dr. Sears, my son would be ready to do this when he reached the age of approximately ... three.
Ah.
I see. Dr. Sears had not accounted for autism when he made this prediction.
At that point I realized that this transition was probably not going to happen all on its own. I created a sticker chart - a cartoon picture of a boy sleeping in a bed, 5 empty squares for stickers, and then a picture of the payoff, a video that Bud knew darned well I wasn't buying any other way. I explained to him that any time he could fall asleep all by himself in his bed, he would get one sticker in the morning, and when he got 5 stickers we would buy the movie. I let him know that this was entirely up to him - if he wasn't ready to try, that was okay and he could try again another time. I also let him know that if he woke up in the night he could come into our room and he would still get his sticker.
It worked beautifully. I think it only took him 6 nights to get 5 stickers, and after a few more sticker charts (each a little longer than the one before) he was falling asleep on his own every night. But like clockwork, each and every night we heard a telltale thump-thump-thump as Bud padded from his room to ours, climbed up the foot of the bed, and squirmed himself into the middle.
We have just passed the one-year mark of Bud falling asleep on his own, and Bud still pads into our room every night at some point. Last night he climbed under the covers and sighed, "This is great." And the thing is, he's right; it is great. I don't have the words to explain it articulately yet, but on a gut level I just know that co-sleeping has made a difference for Bud. I don't think it has made his autism less severe; that's far too simplistic. But I think it has made us more connected. I think it has helped us to read each other better than we would have otherwise, to understand each other on an intuitive level.
In a chapter titled Our Most Important Discovery in her book Making Peace with Autism, Susan Senator described the pivotal moment when she began to understand Nat's need for connection. Kristina Chew at Autismland writes eloquently and frequently about her connection with her son Charlie. In blog after blog written by parents of children on the spectrum, I see examples of great things happening when they are able to connect. How we make the connections that yield success differs from family to family, but that we make the connection seems remarkably consistent. Like Lisa/Jedi, a fellow co-sleeper and recent addition to the world of autism bloggers, I believe that our connection with Bud was cemented with whispers and cuddles and giggles and snuffles amid pillows and flannel sheets.
And so, as Baby Bear said arriving home from his stroll in the woods to find Goldilocks in the house,
"Somebody's been sleeping in my bed ... and he's still there!"
Sunday, January 22, 2006
Anudderday closer to self-regulation
I recognized Bud instantly in a recent post on Autism's Edges, in which MothersVox explored her daughter Sweet M's difficulty with tantrums at the end of an activity that she's not ready to end, like being on the playground bridge by herself. She writes:
"But if I can find a way to help her know that she's not losing the possibility of that pleasure forever, then the transition can be easier. Tricks include consistency—though not necessarily rigidity—but also early warnings, and reminders that TV (or the bridge all to yourself) will be possible again, TV later, TV tomorrow. Aggressive language, a combative attitude, and demands for obedience—"TV off now, take your bath now!" would be completely counterproductive, because then her fear of losing the TV or the wobbly bridge for all time and eternity, would escalate. Parental, and pedagogical, cool heads matter so much."
This is so totally, utterly, and completely true for Bud.
Early warnings, in particular, work so well in helping Bud make transitions. Trying to get him to end his computer time used to be a battle until we figured that out. Now, all I have to do is say "Ten more minutes, Bud, and then it's time to turn off the computer and play toys," wait for the "Okay, Mom," and give him ten minutes to wrap up. At that point, he very calmly shuts down the game, powers down the computer, and walks away. (I have also learned that letting him bring closure to the activity himself is very important; it does not go well if I try to turn of the computer or - heaven forbid - we try to leave the computer on.)
MothersVox's idea of the need for kids with ASD to know that endings are not forever is also true for Bud; he transitions away from fun activities best when he knows he is not giving up his one and only opportunity to do them. For that reason, it is HUGELY important that I make sure that my actions match my words. Luckily, that was an important parenting philosophy for me even before I knew that Bud was on the spectrum; I knew that I never wanted to use "quick fix" solutions to make a transition easier in the moment unless I was fully committed to following through on the promise. I have always chosen my words and made my promises very carefully. Bud has not heard "If we leave the playground right now, then maybe we'll have time to get ice cream after supper," only to learn after supper that "It's too dark and Mommy is tired. Maybe tomorrow, Bud." I avoid answers like "maybe" or "we'll see" in the hope that after some time passes Bud will forget to ask again.
Because I have tried to be so consistent with following through I think that Bud has come to trust that if I tell him we will do something at a later date, he can be confident that we really will. (And I really believe he has internalized the value of a promise as well, which is why I wait for the "Okay, Mom," when I give him a ten-minute warning; I think that, when he is regulated, Bud follows through on his promises as well.) He has also come to trust that when I can't follow-through on something (because, let's face it, we can't always follow through) there is a good reason. So when we couldn't go to gymnastics this week because I was sick, Bud rolled with it beautifully and said "we go to gymnastics anudderday."
Even back when he first started using language Bud recognized that if, by catching me off guard, he could trick me into saying that he could do xyz, I would not reneg on the deal. So I would tell him it was time to stop playing computer and he'd say "Computer in-a morning," and I would agree, thinking that "in the morning" meant "sometime tomorrow." But there he'd be, bounding out of bed at 5:30 a.m. and heading for the mouse. And only then would I realize I'd been had.
I've become more sophisticated since then. But so has Bud. In fact, I now recognize that he uses our negotiations of future pay-offs as a tool for self-regulation. He knows that he will be able to stay regulated through a transition if he has the comfort of knowing that the pay-off will come. The typical transaction usually goes something like this:
"Oh, no! The computer game is broken."
"Yes, Bud, I think it is."
"We buy a new one at the S Store," (which is what Bud calls Toys R Us, for some reason.)
"We can look and see if they have one, Bud. They might not have it."
"Yes. In the morning."
"No, Bud, you have school in the morning."
"Tomorrow."
"No, honey, we won't be able to go to the S Store tomorrow."
"Anudderday."
"Yes. Another day. You got it."
"Anudderday" has become Bud's magic solution for maintaining balance and regulation. All is not lost. Mom said it will happen. I know it will happen.
Anudderday.
"But if I can find a way to help her know that she's not losing the possibility of that pleasure forever, then the transition can be easier. Tricks include consistency—though not necessarily rigidity—but also early warnings, and reminders that TV (or the bridge all to yourself) will be possible again, TV later, TV tomorrow. Aggressive language, a combative attitude, and demands for obedience—"TV off now, take your bath now!" would be completely counterproductive, because then her fear of losing the TV or the wobbly bridge for all time and eternity, would escalate. Parental, and pedagogical, cool heads matter so much."
This is so totally, utterly, and completely true for Bud.
Early warnings, in particular, work so well in helping Bud make transitions. Trying to get him to end his computer time used to be a battle until we figured that out. Now, all I have to do is say "Ten more minutes, Bud, and then it's time to turn off the computer and play toys," wait for the "Okay, Mom," and give him ten minutes to wrap up. At that point, he very calmly shuts down the game, powers down the computer, and walks away. (I have also learned that letting him bring closure to the activity himself is very important; it does not go well if I try to turn of the computer or - heaven forbid - we try to leave the computer on.)
MothersVox's idea of the need for kids with ASD to know that endings are not forever is also true for Bud; he transitions away from fun activities best when he knows he is not giving up his one and only opportunity to do them. For that reason, it is HUGELY important that I make sure that my actions match my words. Luckily, that was an important parenting philosophy for me even before I knew that Bud was on the spectrum; I knew that I never wanted to use "quick fix" solutions to make a transition easier in the moment unless I was fully committed to following through on the promise. I have always chosen my words and made my promises very carefully. Bud has not heard "If we leave the playground right now, then maybe we'll have time to get ice cream after supper," only to learn after supper that "It's too dark and Mommy is tired. Maybe tomorrow, Bud." I avoid answers like "maybe" or "we'll see" in the hope that after some time passes Bud will forget to ask again.
Because I have tried to be so consistent with following through I think that Bud has come to trust that if I tell him we will do something at a later date, he can be confident that we really will. (And I really believe he has internalized the value of a promise as well, which is why I wait for the "Okay, Mom," when I give him a ten-minute warning; I think that, when he is regulated, Bud follows through on his promises as well.) He has also come to trust that when I can't follow-through on something (because, let's face it, we can't always follow through) there is a good reason. So when we couldn't go to gymnastics this week because I was sick, Bud rolled with it beautifully and said "we go to gymnastics anudderday."
Even back when he first started using language Bud recognized that if, by catching me off guard, he could trick me into saying that he could do xyz, I would not reneg on the deal. So I would tell him it was time to stop playing computer and he'd say "Computer in-a morning," and I would agree, thinking that "in the morning" meant "sometime tomorrow." But there he'd be, bounding out of bed at 5:30 a.m. and heading for the mouse. And only then would I realize I'd been had.
I've become more sophisticated since then. But so has Bud. In fact, I now recognize that he uses our negotiations of future pay-offs as a tool for self-regulation. He knows that he will be able to stay regulated through a transition if he has the comfort of knowing that the pay-off will come. The typical transaction usually goes something like this:
"Oh, no! The computer game is broken."
"Yes, Bud, I think it is."
"We buy a new one at the S Store," (which is what Bud calls Toys R Us, for some reason.)
"We can look and see if they have one, Bud. They might not have it."
"Yes. In the morning."
"No, Bud, you have school in the morning."
"Tomorrow."
"No, honey, we won't be able to go to the S Store tomorrow."
"Anudderday."
"Yes. Another day. You got it."
"Anudderday" has become Bud's magic solution for maintaining balance and regulation. All is not lost. Mom said it will happen. I know it will happen.
Anudderday.
Saturday, January 21, 2006
Making Peace with Autism
I just finished Susan Senator's book Making Peace with Autism. I feel like I've gotten to "know" Susan a bit over the past few months, through the insightful posts on her website and blog and through her warm, supportive comments on my blog and others. As I expected, in her book as in the blogosphere she is thoughtful and engaging; but what really struck me about her most as I read chapter after chapter was just how honest she is.
In Making Peace with Autism, Susan invites us into the most private parts of her mind, her heart, and her family as she explores the effect that her oldest son Nat's autism has had on her, her marriage to Ned, and their family life with younger sons Max and Ben. She tells it all just as it happened, without euphemism and without gloss: her fears, her mistakes, her challenges, her anger. She gives voice to the feelings that so many parents of children on the spectrum must have, but are afraid to express because of how they might look to others: feelings of anger, grief, desperation, and hopelessness, all topped with a heavy dose of guilt for having those feelings in the first place (or, as Susan puts it, "feeling bad about feeling bad.") Susan's message comes through clearly: you can be angry and fearful and grief-stricken and desperate and still love your child with all your heart, still be a phenomenal parent.
Nat's autism manifests in very different ways from Bud's and many of the things that Susan has had to manage - aggressive behavior, uncontrollable tantrums, tutors and educators who refuse to work with Nat, and even violence - are not in my experience. I found myself thinking over and over, "this is one penguin who had to walk 70 miles AND confront a seal AND battle a predatory bird, and lived to write about it." It would be a valuable book if it were simply a memoir; however, Susan takes it a step further and provides sidebar information in a sort of "what I know now that I wish I knew then" way. She gives suggestions about very specific issues - preparing for an IEP meeting, deciding whether or not to use medication, surviving beach vacations, getting through the hard and hopeless days - not from the perspective of an expert, but from the perspective of a friend who has been there, has the benefit of hindsight, and is willing not only to spotlight and celebrate her successes, but also to expose and explore her mistakes.
And that is a very rare gift.
In Making Peace with Autism, Susan invites us into the most private parts of her mind, her heart, and her family as she explores the effect that her oldest son Nat's autism has had on her, her marriage to Ned, and their family life with younger sons Max and Ben. She tells it all just as it happened, without euphemism and without gloss: her fears, her mistakes, her challenges, her anger. She gives voice to the feelings that so many parents of children on the spectrum must have, but are afraid to express because of how they might look to others: feelings of anger, grief, desperation, and hopelessness, all topped with a heavy dose of guilt for having those feelings in the first place (or, as Susan puts it, "feeling bad about feeling bad.") Susan's message comes through clearly: you can be angry and fearful and grief-stricken and desperate and still love your child with all your heart, still be a phenomenal parent.
Nat's autism manifests in very different ways from Bud's and many of the things that Susan has had to manage - aggressive behavior, uncontrollable tantrums, tutors and educators who refuse to work with Nat, and even violence - are not in my experience. I found myself thinking over and over, "this is one penguin who had to walk 70 miles AND confront a seal AND battle a predatory bird, and lived to write about it." It would be a valuable book if it were simply a memoir; however, Susan takes it a step further and provides sidebar information in a sort of "what I know now that I wish I knew then" way. She gives suggestions about very specific issues - preparing for an IEP meeting, deciding whether or not to use medication, surviving beach vacations, getting through the hard and hopeless days - not from the perspective of an expert, but from the perspective of a friend who has been there, has the benefit of hindsight, and is willing not only to spotlight and celebrate her successes, but also to expose and explore her mistakes.
And that is a very rare gift.
Thursday, January 19, 2006
"My tooth comed out!"
A trifecta today: the loss of the first baby tooth, great declarative language, and some wonderful terrible grammar!
Wednesday, January 18, 2006
Quiet reflection
Last night I had a tickle in my throat, and this morning I woke up with laryngitis. Just like that - out of the blue - no voice at all.
It's been a trying day. Aside from having no voice, I started the day feeling pretty healthy so I tried to do all of the things I normally do. By 2:00 I was so exhausted I was almost bleary-eyed. I happened to be reading an article about echolalia at the time and was really able to relate it to Bud's language development when it hit me: I've been struggling to talk for one day - really, for only 8 hours - and I am completely tapped out. Bud struggles to talk every single day of his life. That's when I started to see the parallels.
Obviously, speech is not a physical challenge for Bud, but the mental energy he needs to spend to try to string words together to make people understand him is at least as taxing for him as my laryngitis was for me. And it manifests in so many of the same ways.
Throughout the day, though I knew what I wanted to say to people I was continuously weighing the pros and cons of making the effort. Is what I have to say really that important? What if they can't hear me? It's easier to just say nothing. If I don't look at anyone, maybe no one will start talking to me and then I won't have to say anything.
Every time the phone rang, my anxiety escalated. Telephone communication is completely speech-based; I did not believe I could meet the challenge.
Often, when I did speak, people misunderstood what I was trying to say. It was frustrating. If I could have just carried around a tape recorder with a few choice phrases that I could play to people to approximate what I was trying to say, I would have.
As the day wore on, the effort began to take it's toll. I was emotionally spent and physically exhausted. When I came home and tried to tell my husband about my day, straining with the effort of slowly getting each word out until I had finally whispered the whole sentence, and his response was "What?" I wanted to scream and bop him on the nose.
I didn't want to talk to anyone. I wanted to be alone with my books, and my computer, and the things that bring me comfort.
Huh. Whaddaya know.
I'd better find my voice again soon, so I can get back to the work of helping Bud find his.
It's been a trying day. Aside from having no voice, I started the day feeling pretty healthy so I tried to do all of the things I normally do. By 2:00 I was so exhausted I was almost bleary-eyed. I happened to be reading an article about echolalia at the time and was really able to relate it to Bud's language development when it hit me: I've been struggling to talk for one day - really, for only 8 hours - and I am completely tapped out. Bud struggles to talk every single day of his life. That's when I started to see the parallels.
Obviously, speech is not a physical challenge for Bud, but the mental energy he needs to spend to try to string words together to make people understand him is at least as taxing for him as my laryngitis was for me. And it manifests in so many of the same ways.
Throughout the day, though I knew what I wanted to say to people I was continuously weighing the pros and cons of making the effort. Is what I have to say really that important? What if they can't hear me? It's easier to just say nothing. If I don't look at anyone, maybe no one will start talking to me and then I won't have to say anything.
Every time the phone rang, my anxiety escalated. Telephone communication is completely speech-based; I did not believe I could meet the challenge.
Often, when I did speak, people misunderstood what I was trying to say. It was frustrating. If I could have just carried around a tape recorder with a few choice phrases that I could play to people to approximate what I was trying to say, I would have.
As the day wore on, the effort began to take it's toll. I was emotionally spent and physically exhausted. When I came home and tried to tell my husband about my day, straining with the effort of slowly getting each word out until I had finally whispered the whole sentence, and his response was "What?" I wanted to scream and bop him on the nose.
I didn't want to talk to anyone. I wanted to be alone with my books, and my computer, and the things that bring me comfort.
Huh. Whaddaya know.
I'd better find my voice again soon, so I can get back to the work of helping Bud find his.
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