Thursday, April 30, 2009
Brotherly Love
The beauty of these moments is that they are six years in the making. Six years of my twin boys never even acknowledging the other. Six years of wondering when they might someday appreciate that they have a brother who will always understand them, who will always be there for them, who will always have their back as they grow up and face new challenges every day.
We have been working really hard at encouraging more of a relationship between Owen and Will and today they took the first step ON THEIR OWN! It's a beautiful thing.
Tuesday, April 28, 2009
Autism Awareness #8 - Sleep & the Lack of It
Sleep and the lack of it, once dominated nearly every conversation that we had. Get us together with other parents of children with autism and we could talk about our sleepless night stories for hours.
I am thrilled to say that (for now) those nights are but a distant memory. Every now and then someone gets sick and we wake to the sound of Will or Owen singing or kicking the wall and a feeling of dread sinks to the pit of my stomach. Fortunately, it is merely a shadow of the nights we used to have and it passes.
I thought I would copy two of my archived posts about our sleep issues with Will to offer a glimpse of how difficult it can be on families. For any teachers or therapists reading this, I beg of you to have some compassion towards parents who are living through this. Please excuse our absent-mindedness, our emotional outbursts, our short tempers or the fact that our kids are not dressed or brushed. We are hanging on by a thread. Not to mention that our kids' behavioural issues are likely stemming from exhaustion.
Here's a glimpse at our past:
Autism or not, I know there are parents everywhere who have kids who don't sleep well. You can tell which families have got'em. They're the ones with the heavy bags under the eyes, the shirts that are on inside-out, the permanent coffee cup glued in their palm. They snap too much at their kids, they choose tv over playing at the park and they generally look like hell. I sympathize. We've got one. Sometimes two (and on those days we don't even make it out of the house in the mornings for people to see if we fit the description).
We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with Jake and wondering why it wasn't working with Owen and Will. I'm not saying that there IS a reason for their insomnia, I'm just saying they were different. I assumed it was because they shared a room and woke each other up all night, or because they had some digestive issues that caused feeding issues that caused them to wake up to feed more often that caused our sleep deprivation that caused our insanity........ Okay, I can't go back there. Many of you can remember those days with me and will recall that it was definitely not a memorable experience to be with myself or Jonathan during that first year and a half. 1 to 3 hours of sleep for 18 months would destroy the strongest of men. We somehow survived it.
But that's my point. I thought that those newborn days were long over. I was wrong. Now I don't have a newborn whose mewlings cries may have been annoying at 3am, but are not nearly as anxiety-ridden as when your bedroom door gets slammed open at 3, your lights all get turned on, your taps are running full, your other 2 kids are crying because they were awoken the same way. You follow the trail of lit lights downstairs to find a bag of bread torn open with its slices all over the floor and your water cooler depleted of half of its contents. Oh! Is that your sleeve of newly developed photos floating in that 6 x 6 ft giant puddle on the floor? The Wiggles are blaring full blast from the tv, your back door is wide open - freezing air blowing in and where is the culprit?? He's got one foot on the front steps after having figured out how to unlock the front door. Middle of winter. An Alberta winter. It means cold. And if I hadn't woken when I did, Will would probably be on his way to take a dip in the freezing Bow River.. his runaway destination.
There are periods that can last a couple of months where I think "we are so lucky that our kids don't have sleeping issues". When the world is right. When we get 7 to 8 hours a night and our kids hop into bed happily by 8 o'clock and sleep right through. How could I have forgotten that those times can quickly disappear and turn into this?
We are now going on Week 3 of Will's insomnia. Sometimes it shows its ugly head at bedtime. Hour after hour of listening to Will kick the wall and vocally stimming his "oo-oo's and ee-ee's" all night long that can suddenly turn into screaming or crying. Seeing his light flick from underneath the door. You can't help but laugh when you hear him knock on the door from the inside. The worst of it is, you can't check on him. If you do, he knows that you'll come back again and again. So you try to stay out. But if you don't check, you're running the risk of finding a bed or a heating vent full of poo (sorry for the weak stomachs out there) and that usually means a huge cleanup and a bath. You may also risk missing a near accident like the other night. Jonathan abruptly opened Will's door because he heard that he was making a ruckus. Will panicked and leaped off the 6-drawer dresser he was standing on, smacking his cheek. -We somehow avoided a trip to emerg for that one.
But the worst is definitely the wake-ups in the middle of the night. You think you've escaped it. After a long day, the kids have been in bed since 7 or 8 because they couldn't keep their eyes open and you crawl in around midnight. 1 o'clock and BAM! The lights go on and so goes the rest of your sleep. When Will wakes up in the middle of the night, it's not a situation where you can cuddle with him in bed until he falls back into la-la land. Will is up. It's like his brain thinks it's daytime. You can guarantee that you'll be up with him at least until 4 and maybe you can catch a few more hours before the rest of the house has to get up. Just like the newborn era.. Jonathan and I usually argue every single night about whose turn it is to stay up with Will. It's a miserable time. Being a reader, I wouldn't mind the extra time to sit up with a book if I knew I didn't have to chase Will. But you can't sit still with that boy because he destroys everything. He won't sit still and he won't stay in one room for longer than 5 minutes.
Last night was the worst. And the reason for this complaining session. Jonathan was out of town and Jake was out for a visit at Sally and Greg's for the evening. I was looking forward to spending some quality time with Owen and Will. As soon as their therapy ended, no later than 5 minutes after, Will took a leap off the coffee table and knocked his hip off the wood. He yelled so loud! The poor little man bruised himself (yet again) and I felt pretty bad for him. The upset from his hurt turned into a full eruption of a tantrum that lasted an entire hour. There was a point last night, when I was kneeling on my kitchen floor, trying to keep my balance as Will threw his whole body weight against me, clawing at my eyes and mouth, trying to bite my hand, all while trying to butt his head up under my chin.. all at the same time.. I had a pot of Kraft Dinner overflowing and sizzling on the stove beside me.. Owen sitting at the table - crying because he wanted his dinner (yaay! as an aside- at least he wanted to eat!).. I looked into Will's eyes and it was like he was torn between wanting me to console him while wanting to take out his anger on me at the same time.. I suddenly saw him 10 years from now. 10 years stronger. 10 years bigger. 10 years angrier. It scared me. I am grateful right now that the tantrums at home have significantly decreased since we moved out here. But when they happen, it's a reminder of how strong and aggressive Will can be. Hopefully as the years go on, he'll learn skills to help him cope with his frustration so that I won't be lying flat on my kitchen floor.. 10 years from now.. after being knocked over by him. Or Owen. Or Jake. Scary.
But as I was saying. The tantrum lasted quite a while and after figuring out that a really, really deep pressure hug was doing the trick to subside his sobbing, Will finally got a hold of himself again. He disappeared in a flash and I assumed he was off for some time to myself. By this point, Owen had huge alligator tears rolling because he could see his box of Kraft Dinner sitting on the counter, but couldn't understand why it wasn't in his mouth. I decided to leave Will be and feed Owen. It's always a trade-off. Could Will be doing damage while I'm sitting here with Owen? So after Owen ate (a whole bowl!), I went up to check on him. Couldn't find him anywhere! Finally realized that the pile of bedding on his bed was Will sound asleep. I wish I had taken a picture. He was so peaceful.
Now here presented the real problem. It was only 5 o'clock. I decided to let him sleep. I thought that I could handle a 3 or 4 o'clock wake up if that was going to be our fate. So Jake went to bed, Owen went to bed. I cleaned up and thought I would get myself to bed as well so that I could get some precious hours in before the wake-up when BAM! 9 o'clock and guess who's up?
I realize this story is way too long and boring, so I'll cut it short. As long as you get the gist of what a night in the life of Stacey and Jonathan is like. It's not sexy and it's not glamorous. It's cleaning poop out of heating vents, it's cleaning up minor floods, it's coaxing Will down off of the top of the wall unit and it's staying up with him from 9pm to 3am, only to have Owen wake up for his day at 4am. Nights in this house are hell.
So again.. excuse my whining and complaining. But I'm back in newborn mode. And for those who were around back then, you probably know to steer clear this time as well. :) It's 7 o'clock.. gonna try for a bedtime and a full night sleep. Wish me luck!
---------------
Lack of sleep for Will means a miserable, moody, inattentive, sleepy little boy all day long. The tantrums have come back and their intensity has kicked up several notches. He bursts into tears for no apparent reason and gets lost in his stimming when he should be attending to task. All behaviours to be expected when you're sleepy.
So off to his pediatrician yesterday. The result was the doctor's recommendation that we try putting Will on Melatonin.
---and here I decided to put aside my laptop and go to bed. It's now four days later that I finish this post---
So here is the scoop on Melatonin:
According to Newsweek® magazine -
"Melatonin is the all-natural nightcap. It's secreted by the pineal gland, a pea-size structure at the center of the brain, as our eyes register the fall of darkness.
"At night melatonin is produced to help our bodies regulate our sleep-wake cycles. The amount of it produced by our body seems to lessen as we get older. Scientists believe this may be why young people have less problem sleeping than older people.
"Studies suggest that... supplements can hasten sleep and ease jet lag, without the hazards or side effects of prescription sleeping pills."
It may have many other uses and has been reported to make people feel better, strengthen the immune system, and reduce free radicals in the body. Current research is underway to determine its effect as an anti-oxidant, immno-modulator in cancer, delayed sleep-phase disorders, and jet lag. Tests are still under way so there is much to still be learned about it and its effects on the human body. Travelers and people suffering from mild sleep disorders.
According to the article, a typical comment from discussion groups on the Internet is, "'Folks, I've tried it and it's great. It has ...restored my sleep cycle, given me lots of energy.'" (6 Nov. 1995, p. 60-63)
From http://en.wikipedia.org/wiki/Melatonin:
The Melatonin signal forms part of the system that regulates the circadian cycle, but it is the CNS that controls the daily cycle in most components of the paracrine and endocrine systems[8][9] rather than the melatonin signal (as was once postulated).
Nobel Prize laureate Julius Axelrod performed many of the seminal experiments that elucidated the role of melatonin and the pineal gland in regulating sleep-wake cycles (circadian rhythms). In humans, melatonin is produced by the pineal gland, a gland about the size of a pea, that is located in the center of the brain, on the dorsal surface of diencephalon.
Normally, the production of melatonin by the pineal gland is inhibited by light and permitted by darkness. For this reason melatonin has been called "the hormone of darkness". The secretion of melatonin peaks in the middle of the night, and gradually falls during the second half of the night. Until recent history, humans in temperate climates were exposed to up to eighteen hours of darkness in the winter. In this modern world, artificial lighting typically reduces this to eight hours or less per day all year round. Even low light levels inhibit melatonin production to some extent, but over-illumination can create significant reduction in melatonin production. Reduced melatonin production has been proposed as a likely factor in the significantly higher cancer rates in night workers,[10] and the effect of modern lighting practice on endogenous melatonin has been proposed as a contributory factor to the larger overall incidence of some cancers in the developed world.[11] As inadequate as blood concentrations may be in brightly-lit environments, some scientists now believe that people's overnight output of melatonin can be further jeopardized each time they interrupt their sleep and turn on a bright light (suggesting that the lower brightness level of a nightlight would be safer). Others suggest that such short exposures do no harm.[12]
So the long and the short of it is that as of last Thursday night, we have been giving Will the melatonin supplement every evening, an hour before Will's bedtime. It's an over-the-counter supplement and Jonathan picked it up in the form of a chocolate-flavoured strip that dissolves on the tongue. The first couple of nights were a total battle and Will kicked and punched while we tried to keep it in his mouth. His exhaustion and lack of sleep were at its peak and Will konked out early both nights, but was up by 1am and was wide awake to start his day. Brutal.
The last two nights have been a little better. I managed to get the whole strip to dissolve, Will fell asleep at a decent hour, but he has still been waking up sometime between 4:30am and 6am. Not as bad as 1am, but still not a great night sleep for Mom and Dad. At least Will seems to be coming back to his old self. His staff say that he was "on" throughout the day and was able to focus and attend to task.
Here's a scary glimpse of what it is like to live with the fear that Will's sleeping habits put on us all. We have installed a security system in the house. Not to keep burglars OUT, but to keep Will IN. There are alarms/chimes on all the exterior doors and we also installed one on Will's bedroom door. Each time the doors open, the chimes go off and the idea is that Jonathan or I should hear and know when Will is out of his room or if he has opened a door to outside. The problem of late is that we are soooo tired from our own lack of sleep that we are somehow sleeping through the sound of the alarm going off. So we are not exactly sure what time Will has been getting up in the morning. We get up to find Will's trail of destruction throughout the house and we can tell he's been up for ages. This morning I heard the chime sound just before 7am. I hollered to Will and he scooted into our room and hopped into bed with us (so cute too because he crawls right in the middle and pulls the blankets up under his chin, then checks to make sure that Jonathan and I both have our blankets pulled up as well). I was thrilled because I thought that he had slept through the night and he was in a great mood. Michelle burst into our room looking for Will. She had just woken up to find the main floor freezing cold and our back door wide open- the wind blowing in. Michelle ran outside to find that the side gate was also open, which means if Will had run out, he was long gone. We all know now that Will was tucked in safely under my covers, but you can imagine Michelle's panic. Yes, Will's safe. But at some point in the night.. or in the morning.. he was up and on the loose. I don't want to think about it anymore.
So that's that. Tonight is a new night and we'll see what happens. Wish us luck!
-----------------------------------
I must say that all of these issues absolutely disappeared within the week that we introduced some major dietary changes. I'll save those changes for another Awareness item. To any of you parents suffering through your own sleepless nights.. we are an example of people who came through the other side of it!! I'm sure I just jinxed it and we could go through the same phase again, but at least now I believe it won't always be so bad. It can get better.
I am thrilled to say that (for now) those nights are but a distant memory. Every now and then someone gets sick and we wake to the sound of Will or Owen singing or kicking the wall and a feeling of dread sinks to the pit of my stomach. Fortunately, it is merely a shadow of the nights we used to have and it passes.
I thought I would copy two of my archived posts about our sleep issues with Will to offer a glimpse of how difficult it can be on families. For any teachers or therapists reading this, I beg of you to have some compassion towards parents who are living through this. Please excuse our absent-mindedness, our emotional outbursts, our short tempers or the fact that our kids are not dressed or brushed. We are hanging on by a thread. Not to mention that our kids' behavioural issues are likely stemming from exhaustion.
Here's a glimpse at our past:
Thursday, January 11, 2007
Sleepless Nights with Wild Will
No fun pictures for today's post. Just some whining and complaining. Can't help it. When your head is filled with cotton, you can't help but waanh a little bit.Autism or not, I know there are parents everywhere who have kids who don't sleep well. You can tell which families have got'em. They're the ones with the heavy bags under the eyes, the shirts that are on inside-out, the permanent coffee cup glued in their palm. They snap too much at their kids, they choose tv over playing at the park and they generally look like hell. I sympathize. We've got one. Sometimes two (and on those days we don't even make it out of the house in the mornings for people to see if we fit the description).
We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with Jake and wondering why it wasn't working with Owen and Will. I'm not saying that there IS a reason for their insomnia, I'm just saying they were different. I assumed it was because they shared a room and woke each other up all night, or because they had some digestive issues that caused feeding issues that caused them to wake up to feed more often that caused our sleep deprivation that caused our insanity........ Okay, I can't go back there. Many of you can remember those days with me and will recall that it was definitely not a memorable experience to be with myself or Jonathan during that first year and a half. 1 to 3 hours of sleep for 18 months would destroy the strongest of men. We somehow survived it.
But that's my point. I thought that those newborn days were long over. I was wrong. Now I don't have a newborn whose mewlings cries may have been annoying at 3am, but are not nearly as anxiety-ridden as when your bedroom door gets slammed open at 3, your lights all get turned on, your taps are running full, your other 2 kids are crying because they were awoken the same way. You follow the trail of lit lights downstairs to find a bag of bread torn open with its slices all over the floor and your water cooler depleted of half of its contents. Oh! Is that your sleeve of newly developed photos floating in that 6 x 6 ft giant puddle on the floor? The Wiggles are blaring full blast from the tv, your back door is wide open - freezing air blowing in and where is the culprit?? He's got one foot on the front steps after having figured out how to unlock the front door. Middle of winter. An Alberta winter. It means cold. And if I hadn't woken when I did, Will would probably be on his way to take a dip in the freezing Bow River.. his runaway destination.
There are periods that can last a couple of months where I think "we are so lucky that our kids don't have sleeping issues". When the world is right. When we get 7 to 8 hours a night and our kids hop into bed happily by 8 o'clock and sleep right through. How could I have forgotten that those times can quickly disappear and turn into this?
We are now going on Week 3 of Will's insomnia. Sometimes it shows its ugly head at bedtime. Hour after hour of listening to Will kick the wall and vocally stimming his "oo-oo's and ee-ee's" all night long that can suddenly turn into screaming or crying. Seeing his light flick from underneath the door. You can't help but laugh when you hear him knock on the door from the inside. The worst of it is, you can't check on him. If you do, he knows that you'll come back again and again. So you try to stay out. But if you don't check, you're running the risk of finding a bed or a heating vent full of poo (sorry for the weak stomachs out there) and that usually means a huge cleanup and a bath. You may also risk missing a near accident like the other night. Jonathan abruptly opened Will's door because he heard that he was making a ruckus. Will panicked and leaped off the 6-drawer dresser he was standing on, smacking his cheek. -We somehow avoided a trip to emerg for that one.
But the worst is definitely the wake-ups in the middle of the night. You think you've escaped it. After a long day, the kids have been in bed since 7 or 8 because they couldn't keep their eyes open and you crawl in around midnight. 1 o'clock and BAM! The lights go on and so goes the rest of your sleep. When Will wakes up in the middle of the night, it's not a situation where you can cuddle with him in bed until he falls back into la-la land. Will is up. It's like his brain thinks it's daytime. You can guarantee that you'll be up with him at least until 4 and maybe you can catch a few more hours before the rest of the house has to get up. Just like the newborn era.. Jonathan and I usually argue every single night about whose turn it is to stay up with Will. It's a miserable time. Being a reader, I wouldn't mind the extra time to sit up with a book if I knew I didn't have to chase Will. But you can't sit still with that boy because he destroys everything. He won't sit still and he won't stay in one room for longer than 5 minutes.
Last night was the worst. And the reason for this complaining session. Jonathan was out of town and Jake was out for a visit at Sally and Greg's for the evening. I was looking forward to spending some quality time with Owen and Will. As soon as their therapy ended, no later than 5 minutes after, Will took a leap off the coffee table and knocked his hip off the wood. He yelled so loud! The poor little man bruised himself (yet again) and I felt pretty bad for him. The upset from his hurt turned into a full eruption of a tantrum that lasted an entire hour. There was a point last night, when I was kneeling on my kitchen floor, trying to keep my balance as Will threw his whole body weight against me, clawing at my eyes and mouth, trying to bite my hand, all while trying to butt his head up under my chin.. all at the same time.. I had a pot of Kraft Dinner overflowing and sizzling on the stove beside me.. Owen sitting at the table - crying because he wanted his dinner (yaay! as an aside- at least he wanted to eat!).. I looked into Will's eyes and it was like he was torn between wanting me to console him while wanting to take out his anger on me at the same time.. I suddenly saw him 10 years from now. 10 years stronger. 10 years bigger. 10 years angrier. It scared me. I am grateful right now that the tantrums at home have significantly decreased since we moved out here. But when they happen, it's a reminder of how strong and aggressive Will can be. Hopefully as the years go on, he'll learn skills to help him cope with his frustration so that I won't be lying flat on my kitchen floor.. 10 years from now.. after being knocked over by him. Or Owen. Or Jake. Scary.
But as I was saying. The tantrum lasted quite a while and after figuring out that a really, really deep pressure hug was doing the trick to subside his sobbing, Will finally got a hold of himself again. He disappeared in a flash and I assumed he was off for some time to myself. By this point, Owen had huge alligator tears rolling because he could see his box of Kraft Dinner sitting on the counter, but couldn't understand why it wasn't in his mouth. I decided to leave Will be and feed Owen. It's always a trade-off. Could Will be doing damage while I'm sitting here with Owen? So after Owen ate (a whole bowl!), I went up to check on him. Couldn't find him anywhere! Finally realized that the pile of bedding on his bed was Will sound asleep. I wish I had taken a picture. He was so peaceful.
Now here presented the real problem. It was only 5 o'clock. I decided to let him sleep. I thought that I could handle a 3 or 4 o'clock wake up if that was going to be our fate. So Jake went to bed, Owen went to bed. I cleaned up and thought I would get myself to bed as well so that I could get some precious hours in before the wake-up when BAM! 9 o'clock and guess who's up?
I realize this story is way too long and boring, so I'll cut it short. As long as you get the gist of what a night in the life of Stacey and Jonathan is like. It's not sexy and it's not glamorous. It's cleaning poop out of heating vents, it's cleaning up minor floods, it's coaxing Will down off of the top of the wall unit and it's staying up with him from 9pm to 3am, only to have Owen wake up for his day at 4am. Nights in this house are hell.
So again.. excuse my whining and complaining. But I'm back in newborn mode. And for those who were around back then, you probably know to steer clear this time as well. :) It's 7 o'clock.. gonna try for a bedtime and a full night sleep. Wish me luck!
---------------
Wednesday, May 23, 2007
Sleep Deprivation
Will isn't sleeping. Again. We always seem to go through phases with him and before the time change, we had a run of at least a month where he slept from bedtime right through until about 6 o'clock. The time changes have always affected my boys, particularly so with Will. This move to Calgary has only enhanced the difficulty in this transition. It's only late May and the days are getting longer and longer. It isn't dark until 10:30pm which means Will won't sleep. There are darkening shades, a pull-down shade and a curtain on his window but it makes no difference. Something in his brain tells him it's light out and he won't sleep. Bedtimes are becoming more and more difficult because he is fighting it all the way - somersaulting across his bed to kick his heels into the wall, jumping off his dresser, standing in his windowsill, all while yelling the whole time. Not fun.Lack of sleep for Will means a miserable, moody, inattentive, sleepy little boy all day long. The tantrums have come back and their intensity has kicked up several notches. He bursts into tears for no apparent reason and gets lost in his stimming when he should be attending to task. All behaviours to be expected when you're sleepy.
So off to his pediatrician yesterday. The result was the doctor's recommendation that we try putting Will on Melatonin.
---and here I decided to put aside my laptop and go to bed. It's now four days later that I finish this post---
So here is the scoop on Melatonin:
According to Newsweek® magazine -
"Melatonin is the all-natural nightcap. It's secreted by the pineal gland, a pea-size structure at the center of the brain, as our eyes register the fall of darkness.
"At night melatonin is produced to help our bodies regulate our sleep-wake cycles. The amount of it produced by our body seems to lessen as we get older. Scientists believe this may be why young people have less problem sleeping than older people.
"Studies suggest that... supplements can hasten sleep and ease jet lag, without the hazards or side effects of prescription sleeping pills."
It may have many other uses and has been reported to make people feel better, strengthen the immune system, and reduce free radicals in the body. Current research is underway to determine its effect as an anti-oxidant, immno-modulator in cancer, delayed sleep-phase disorders, and jet lag. Tests are still under way so there is much to still be learned about it and its effects on the human body. Travelers and people suffering from mild sleep disorders.
According to the article, a typical comment from discussion groups on the Internet is, "'Folks, I've tried it and it's great. It has ...restored my sleep cycle, given me lots of energy.'" (6 Nov. 1995, p. 60-63)
From http://en.wikipedia.org/wiki/Melatonin:
The Melatonin signal forms part of the system that regulates the circadian cycle, but it is the CNS that controls the daily cycle in most components of the paracrine and endocrine systems[8][9] rather than the melatonin signal (as was once postulated).
Nobel Prize laureate Julius Axelrod performed many of the seminal experiments that elucidated the role of melatonin and the pineal gland in regulating sleep-wake cycles (circadian rhythms). In humans, melatonin is produced by the pineal gland, a gland about the size of a pea, that is located in the center of the brain, on the dorsal surface of diencephalon.
Normally, the production of melatonin by the pineal gland is inhibited by light and permitted by darkness. For this reason melatonin has been called "the hormone of darkness". The secretion of melatonin peaks in the middle of the night, and gradually falls during the second half of the night. Until recent history, humans in temperate climates were exposed to up to eighteen hours of darkness in the winter. In this modern world, artificial lighting typically reduces this to eight hours or less per day all year round. Even low light levels inhibit melatonin production to some extent, but over-illumination can create significant reduction in melatonin production. Reduced melatonin production has been proposed as a likely factor in the significantly higher cancer rates in night workers,[10] and the effect of modern lighting practice on endogenous melatonin has been proposed as a contributory factor to the larger overall incidence of some cancers in the developed world.[11] As inadequate as blood concentrations may be in brightly-lit environments, some scientists now believe that people's overnight output of melatonin can be further jeopardized each time they interrupt their sleep and turn on a bright light (suggesting that the lower brightness level of a nightlight would be safer). Others suggest that such short exposures do no harm.[12]
So the long and the short of it is that as of last Thursday night, we have been giving Will the melatonin supplement every evening, an hour before Will's bedtime. It's an over-the-counter supplement and Jonathan picked it up in the form of a chocolate-flavoured strip that dissolves on the tongue. The first couple of nights were a total battle and Will kicked and punched while we tried to keep it in his mouth. His exhaustion and lack of sleep were at its peak and Will konked out early both nights, but was up by 1am and was wide awake to start his day. Brutal.
The last two nights have been a little better. I managed to get the whole strip to dissolve, Will fell asleep at a decent hour, but he has still been waking up sometime between 4:30am and 6am. Not as bad as 1am, but still not a great night sleep for Mom and Dad. At least Will seems to be coming back to his old self. His staff say that he was "on" throughout the day and was able to focus and attend to task.
Here's a scary glimpse of what it is like to live with the fear that Will's sleeping habits put on us all. We have installed a security system in the house. Not to keep burglars OUT, but to keep Will IN. There are alarms/chimes on all the exterior doors and we also installed one on Will's bedroom door. Each time the doors open, the chimes go off and the idea is that Jonathan or I should hear and know when Will is out of his room or if he has opened a door to outside. The problem of late is that we are soooo tired from our own lack of sleep that we are somehow sleeping through the sound of the alarm going off. So we are not exactly sure what time Will has been getting up in the morning. We get up to find Will's trail of destruction throughout the house and we can tell he's been up for ages. This morning I heard the chime sound just before 7am. I hollered to Will and he scooted into our room and hopped into bed with us (so cute too because he crawls right in the middle and pulls the blankets up under his chin, then checks to make sure that Jonathan and I both have our blankets pulled up as well). I was thrilled because I thought that he had slept through the night and he was in a great mood. Michelle burst into our room looking for Will. She had just woken up to find the main floor freezing cold and our back door wide open- the wind blowing in. Michelle ran outside to find that the side gate was also open, which means if Will had run out, he was long gone. We all know now that Will was tucked in safely under my covers, but you can imagine Michelle's panic. Yes, Will's safe. But at some point in the night.. or in the morning.. he was up and on the loose. I don't want to think about it anymore.
So that's that. Tonight is a new night and we'll see what happens. Wish us luck!
-----------------------------------
I must say that all of these issues absolutely disappeared within the week that we introduced some major dietary changes. I'll save those changes for another Awareness item. To any of you parents suffering through your own sleepless nights.. we are an example of people who came through the other side of it!! I'm sure I just jinxed it and we could go through the same phase again, but at least now I believe it won't always be so bad. It can get better.
Friday, April 24, 2009
Autism Awareness #7 - Parents - We are enough
My cousin, Jennie forwarded me the most beautiful quote. I wanted to share it with all of the other parents out there who may be struggling, particularly my fellow Autism Mommies...
I say that the only failure one parent can legitimately feel is if they choose to do nothing at all to support their child, because of their own selfishness or laziness. I won't judge and define what would qualify a parent as being selfish, or lazy, because I'm sure that deep-down, those parents know who they are. But as long as we are all looking out for our child's best interest, to the best of our abilities, we are enough.
Back to Jennie, she also forwarded me an email last week from a friend of hers to whom she had referred my blog:
Sol Lewitt to Eva Hesse:This ties in nicely to the conversation I had with my social worker last night. I am so, so, so very blessed to have L as our family's advocate. She is such a beautiful and compassionate soul who goes above and beyond everyday in her work. When we were discussing something to do with our therapy contracts, I was beating myself up for not doing something I should have, but forgot to. She stopped me mid-sentence and gave me a proper tongue lashing. I'm paraphrasing, but she said:
Just stop thinking, worrying, looking over your shoulder, wondering, doubting, fearing, hurting, hoping for some easy way out, struggling, gasping, confusing, itching, scratching, mumbling, bumbling, grumbling, humbling, stumbling, rumbling, rambling, gambling, tumbling, scumbling, scrambling, hitching, hatchiiing, bitching, moaning, groaning, honing, boning...searching, perching, besmirching, grinding grinding grinding away at yourself. stop it and just DO...trust and tickle something inside you, your "weird humor." you belong in the most secret part of you. don't worry about cool, make your own uncool...if you fear, make it work for you -- draw and paint your fear and anxiety. and stop worrying about big, deep things such as "to decide on a purpose and way of life..." you must practice being stupid, dumb, unthinking, empty. then you will be able to DO! i have much confidence in you and even though you are tormenting yourself, the work you do is very good. try and do some BAD work. the worst you can think of and see what happens but mainly relax and let everything go to hell.
"Do you think that those Oil execs in Calgary, driving around in their expensive suits in their Lexus or Hummers, with their screaming, bratty, spoiled kids in the back seats, will ever experience the universe's moments of beauty? While they are patting themselves on the backs, thinking of themselves as heroes for pulling off multi-million deals for stripping the Earth, do you think they have ever taken the time to see the beauty in their children's simple accomplishments? Our society looks at celebrities with hero worship, when they've all got their trainers, their personal chefs, their nannies and their personal assistants, do you think they have the time to feel the fierce pride in their children from across the room as their nannies hold them? Parents with children with special needs are the heroes in life. Not just for what you do for your children, which I (she) thinks is above and beyond what other parents would do, but because parenting these kids has given you opportunity to experience life's joys in ways the others will never get to. You will be judged as having been the best you could be for your children, so please stop thinking otherwise."All parents are experts in beating themselves up. It's so easy to preach and say that we shouldn't be so hard on ourselves, but I think it's instinctive to feel that way because we want so MUCH for our kids. I think that it's particularly difficult for parents with kids with autism. There is so much contradictory information out there right now on what we can or should be doing for our kids. We are in a limbo state right now. Because we still don't know the cause of autism, we don't know what we should do about it. There are a million different kinds of interventions that range from behavioural, to bio-medical, to sensory, etc. Just coping with the day to day of parenting our children can take 150% so how can we be expected to do research on top of that AND attempt new strategies AND advocate AND try to give back to the community and raise autism awareness? It's becoming even more difficult now that autism is so often in the news. When you hear the Jenny McCarthy's who would accept no less than 1000% effort by following her own experienced strategies, it makes the others who may not be taking the same route, feel that they are not doing enough.
I say that the only failure one parent can legitimately feel is if they choose to do nothing at all to support their child, because of their own selfishness or laziness. I won't judge and define what would qualify a parent as being selfish, or lazy, because I'm sure that deep-down, those parents know who they are. But as long as we are all looking out for our child's best interest, to the best of our abilities, we are enough.
Back to Jennie, she also forwarded me an email last week from a friend of hers to whom she had referred my blog:
Hey Jennie,
Realized I hadn't replied to you after sharing your cousin's blog.
Thanks so much. I can honestly say that this is the first blog I've
read in a long long time that made me want to keep reading. I really
like her attitude and can see that she's doing A LOT of good. She
puts me to shame really. I've had friends tell me over and over
again that I should be doing just this - creating awareness, telling
our story so other's have a better understanding of what it all
really means. Even rallying the troops to take action against our
governments complete disinterest in these children. I just never
felt I had the time. Between caring for Garrett, getting him to his
daily therapy sessions and working obscene hours to pay for it all, I
thought that was enough of an excuse. But here, your cousin has
three children - two of them twins on the spectrum! I have no
excuse. Fortunately I can continue to duck the extra work and just
point people to her site from now on!
I typically tend to steer clear of books or blogs written by other
parents. Sometimes it's depressing (we're taking this a day at a
time and don't want to speculate too much on Garrett's future). In
other cases - Jenny McCarthy for example - it's extremely off
putting. In her case she makes gross exaggerations and clearly
doesn't understand autism the ways she claims to. Don't get me wrong,
I think the only way I got through the first week after our diagnosis
was by reading "Let me hear your voice," a book written by a mother
of two autistic children that chronicles her journey through self-
education, trial treatments and eventually "recovery" for her
children. (I could write volumes on why I put the word recovery in
quotes but for now I'll leave it at that).
I did read much of your cousin's blog, however, and it's absolutely
perfect. She's a great writer/story teller. She's done a great job
at giving people a window into her whole experience. And clearly
she's helping - early signs etc. I recognize so much of our
experience in her account of the early days, the nagging suspicions,
the testing etc. It was all very similar for us. I'll definitely be
tuning it in future.
Thanks!
I am not posting this email for self-promotion. Rather, I felt a bit sick after reading it. I don't blog
to make anyone feel guilty that they are not doing as much as I am. The only difference between
me and other autism parents, might be that I blog. I'm bragging about all that I do so people know about it. I will never know all that the next mom does, unless she decided to blog about it. We don't go around showing off and spouting off our list of accomplishments and efforts (okay, so maybe some of us do!). What I'm trying to say is that I don't want to hear another parent feel badly about their own efforts. It's all relative.
You may not have the same support that I have at home from family or friends
You may have a child/or children whose needs far outweigh mine
You may have a job that takes you out of the home
You may have your own personal health or stress issues that I don't
You may have a social life that allows you to escape the world of autism every now and then
I don't know what separates us, but we all live with different circumstances. No two children with autism are alike and my twins are a testament to that. So why should parents feel that we all should be putting forth the same effort?
As L was trying to explain to me. We are enough because if you are even reading my blog and opening your mind to other's experiences and continuing in your efforts to learn more to help your children, then you are doing more than the average parent. We are enough for our kids.
Just as our children are enough for us. No matter their challenges.
Just please don't tell me you are doing nothing. That is not enough.
to make anyone feel guilty that they are not doing as much as I am. The only difference between
me and other autism parents, might be that I blog. I'm bragging about all that I do so people know about it. I will never know all that the next mom does, unless she decided to blog about it. We don't go around showing off and spouting off our list of accomplishments and efforts (okay, so maybe some of us do!). What I'm trying to say is that I don't want to hear another parent feel badly about their own efforts. It's all relative.
You may not have the same support that I have at home from family or friends
You may have a child/or children whose needs far outweigh mine
You may have a job that takes you out of the home
You may have your own personal health or stress issues that I don't
You may have a social life that allows you to escape the world of autism every now and then
I don't know what separates us, but we all live with different circumstances. No two children with autism are alike and my twins are a testament to that. So why should parents feel that we all should be putting forth the same effort?
As L was trying to explain to me. We are enough because if you are even reading my blog and opening your mind to other's experiences and continuing in your efforts to learn more to help your children, then you are doing more than the average parent. We are enough for our kids.
Just as our children are enough for us. No matter their challenges.
Just please don't tell me you are doing nothing. That is not enough.
Wednesday, April 22, 2009
I will never forget
"Lonely rivers flow to the sea,
to the sea
to the open arms of the sea
lonely rivers sigh 'wait for me, wait for me'
I'll be coming home wait for me"
- I will never forget Jonathan's 17 year old voice singing Unchained Melody to me on a cassette (you can laugh- I still do).
My 'don't forget me' mixed tape for our separation while he spent a summer in Switzerland.
I spent a year in the dark.
At least a year in bed, not wanting to see anyone, not wanting to talk to anyone.
Wishing I could sleep my life away.
For two years, I crawled in all of my dreams.
I watched everyone run ahead of me, while I dragged my knees through the dirt.
- I will never forget the morning I woke up and realized that in my last dream,
I was running again
They were so ugly that they were the cutest things we had ever seen.
A handful of wriggly wrinkles and slobbery kisses.
Stephanie went home with the sleepy-eyed, Penelope,
Jonathan and I went home with the pug-on-coke, Matilda.
We paid an outrageous amount of money and
15 minutes into the drive home with our new family..
- I will never forget my shock with the realization that little worms were crawling out
of my darling, new, little pug's butt
Remember this?
Jake was five, his brothers were three.
He tried and tried, but he got no love from Owen. He'd try to cuddle. He'd try to hug.
He'd make funny faces. He'd bring them their favourite things. He'd mimic the therapists
and me to try and coax some acknowledgment from O.
One night he found the magic button and the result was a bear hug
from his ordinarily-cold brother.
- I will never forget the look of sheer joy of Jacob's face when he turned his beautiful face to me
and said "Mommy!!! Owen loves me! He really loves me!"
Nellie was a beautiful soul.
She was absolutely selfless and had an innocent heart that opened up to everyone she met.
My nan let me stroke the fine skin on the top of her hands
and she'd use her hands to carefully scrape exactly half a tin of DelMonte fruit cups
for our bed-time snack.
My Nanna loved me and never once made me feel bad about myself.
She made me want to be a better person.
- I will never forget the moment my Nan took her last breath and the feeling that she took a piece of all of us with her when she left.
I peed on a stick. It turned blue.
I was no longer one. Now I was two.
The second time, I felt like there were five.
An ultrasound said there were two.
I felt the tumbles, the rolls, the hiccups, the pokes and the kicks
and I longed for those sensations when all was still.
- I will never forget the mixed emotions I felt when each of my babies were placed in my arms for the first time. Fierce joy and calm. Intense love and fear. Because I already missed knowing it was just me and them. And now I had to share and expose them to the world.
to the sea
to the open arms of the sea
lonely rivers sigh 'wait for me, wait for me'
I'll be coming home wait for me"
- I will never forget Jonathan's 17 year old voice singing Unchained Melody to me on a cassette (you can laugh- I still do).
My 'don't forget me' mixed tape for our separation while he spent a summer in Switzerland.
I spent a year in the dark.
At least a year in bed, not wanting to see anyone, not wanting to talk to anyone.
Wishing I could sleep my life away.
For two years, I crawled in all of my dreams.
I watched everyone run ahead of me, while I dragged my knees through the dirt.
- I will never forget the morning I woke up and realized that in my last dream,
I was running again
They were so ugly that they were the cutest things we had ever seen.
A handful of wriggly wrinkles and slobbery kisses.
Stephanie went home with the sleepy-eyed, Penelope,
Jonathan and I went home with the pug-on-coke, Matilda.
We paid an outrageous amount of money and
15 minutes into the drive home with our new family..
- I will never forget my shock with the realization that little worms were crawling out
of my darling, new, little pug's butt
Remember this?
Jake was five, his brothers were three.
He tried and tried, but he got no love from Owen. He'd try to cuddle. He'd try to hug.
He'd make funny faces. He'd bring them their favourite things. He'd mimic the therapists
and me to try and coax some acknowledgment from O.
One night he found the magic button and the result was a bear hug
from his ordinarily-cold brother.
- I will never forget the look of sheer joy of Jacob's face when he turned his beautiful face to me
and said "Mommy!!! Owen loves me! He really loves me!"
Nellie was a beautiful soul.
She was absolutely selfless and had an innocent heart that opened up to everyone she met.
My nan let me stroke the fine skin on the top of her hands
and she'd use her hands to carefully scrape exactly half a tin of DelMonte fruit cups
for our bed-time snack.
My Nanna loved me and never once made me feel bad about myself.
She made me want to be a better person.
- I will never forget the moment my Nan took her last breath and the feeling that she took a piece of all of us with her when she left.
I peed on a stick. It turned blue.
I was no longer one. Now I was two.
The second time, I felt like there were five.
An ultrasound said there were two.
I felt the tumbles, the rolls, the hiccups, the pokes and the kicks
and I longed for those sensations when all was still.
- I will never forget the mixed emotions I felt when each of my babies were placed in my arms for the first time. Fierce joy and calm. Intense love and fear. Because I already missed knowing it was just me and them. And now I had to share and expose them to the world.
Tuesday, April 21, 2009
Tuesday's Tribute - Electro
Today I am supposed to shine the light on someone else. I talk an awful lot on here about my views, my feelings, my friends and mostly, my boys. But one boy doesn't get enough recognition.
Jonathan. Also known as Dr. Evil or Electro. This is my husband. I have referenced him on the blog many times, but I suspect it has often been in a list of who was attending this or that. Or he was likely the butt of one of my lame jokes. I often make fun of him as we did to each other since we met in the 7th grade. I know that I often downplay his role in our family because it's easy to shelf him into the "off at work" category. If there is an argument between the two of us.. he is to blame. If the kids are cranky, Jonathan probably had something to do with it. If the house is a mess, he probably made it. If I am extraordinarily tired out or stressed, he is to blame because he's not doing enough to help.
When he and I get into those marital discussions about who is doing more or who isn't doing their share in the household and parental responsibilities, Jonathan's defence is usually "you should be grateful because I do more than most husbands do". I personally don't think that's something to necessarily be proud of. Just because you can find examples of guys who don't participate in parenting to the same degree you do, does not mean that you are still doing all that you could or at least your share.
But I acknowledge that I am not showing my appreciation for what he does do.
Jonathan loves our boys. There are many husbands out there who have a hard time living with the diagnosis of autism. I have to say that I really do thank my lucky stars that Jonathan and I have pretty much been on the same page since Day One on what direction we wanted to go in for our kids. I recognize what a blessing this is. It's hard enough without having to defend your every thought, feeling and decision to your spouse.
He cracks me up. In my head, I laugh all the time. I couldn't dare laugh on the outside because then he'd know he really is funny. His sense of humour might be terribly immature- a lot of toilet humour a la Beavis and Butthead and you will probably hear the same lines ("does that come in men's?") a thousand times over- but he can keep a heavy situation light and he can definitely make a boring presentation or class a laugh to sit through. He also knows how to laugh at himself. He even admits to his students that his nickname was Electro because of his time on a primary school breakdancing group. He doesn't hate me for telling the same stories over and over again to everyone I meet about how he found himself of Walter Gretzky's garage, or how he danced so pretty as a cheerleader in high school AND university. He likes to pretend he's mature and serious, but he's not afraid to dress up like David Lee Roth in a pink jumpsuit and wig in front of his junior high students or don the Santa suit for our annual Christmas party. And he does some mean impersonations of the Squire.
He's smart and can kick my ass in geography and history trivia and his insistence that no one can ever beat him in sports trivia borders on the ridiculous. For this- he entertains me. Because we can spend a lot of time making fun of the fact that a sport-clueless girl can come up with an answer that skunked his, or we can laugh at his competitiveness when he loses at bowling.
Okay. So his frustration tolerance level is pretty low at times. But he works his butt off to do right by his kids. He gets up with us every morning to help get the kids ready for school. He lets me sleep in more often than he gets to himself. When we went through our years of sleeplessness, we would take turns at getting up with Will. When we have a poop accident in the house, he's there with the carpet cleaner. When the kids are restless and I need an empty house so that I can do some housework, he single-handedly will haul all three boys off to a park or the pool- something I would NEVER do on my own. When we set up the waterslide in the backyard, he's out there with the kids making a fool of himself as he bellyflops to the bottom. He's the one sweating bullets on a hot day with a boy's hand in each of his and one hanging off his back.
Most of all, Jonathan is still the same guy I loved and hated in the 7th grade. He's still my best friend, even if our thinking does not always follow the same path. When it comes down to it, there's no one else I'd rather be on this journey with.
Jonathan. Also known as Dr. Evil or Electro. This is my husband. I have referenced him on the blog many times, but I suspect it has often been in a list of who was attending this or that. Or he was likely the butt of one of my lame jokes. I often make fun of him as we did to each other since we met in the 7th grade. I know that I often downplay his role in our family because it's easy to shelf him into the "off at work" category. If there is an argument between the two of us.. he is to blame. If the kids are cranky, Jonathan probably had something to do with it. If the house is a mess, he probably made it. If I am extraordinarily tired out or stressed, he is to blame because he's not doing enough to help.When he and I get into those marital discussions about who is doing more or who isn't doing their share in the household and parental responsibilities, Jonathan's defence is usually "you should be grateful because I do more than most husbands do". I personally don't think that's something to necessarily be proud of. Just because you can find examples of guys who don't participate in parenting to the same degree you do, does not mean that you are still doing all that you could or at least your share.
But I acknowledge that I am not showing my appreciation for what he does do.
Jonathan loves our boys. There are many husbands out there who have a hard time living with the diagnosis of autism. I have to say that I really do thank my lucky stars that Jonathan and I have pretty much been on the same page since Day One on what direction we wanted to go in for our kids. I recognize what a blessing this is. It's hard enough without having to defend your every thought, feeling and decision to your spouse.
He cracks me up. In my head, I laugh all the time. I couldn't dare laugh on the outside because then he'd know he really is funny. His sense of humour might be terribly immature- a lot of toilet humour a la Beavis and Butthead and you will probably hear the same lines ("does that come in men's?") a thousand times over- but he can keep a heavy situation light and he can definitely make a boring presentation or class a laugh to sit through. He also knows how to laugh at himself. He even admits to his students that his nickname was Electro because of his time on a primary school breakdancing group. He doesn't hate me for telling the same stories over and over again to everyone I meet about how he found himself of Walter Gretzky's garage, or how he danced so pretty as a cheerleader in high school AND university. He likes to pretend he's mature and serious, but he's not afraid to dress up like David Lee Roth in a pink jumpsuit and wig in front of his junior high students or don the Santa suit for our annual Christmas party. And he does some mean impersonations of the Squire.
He's smart and can kick my ass in geography and history trivia and his insistence that no one can ever beat him in sports trivia borders on the ridiculous. For this- he entertains me. Because we can spend a lot of time making fun of the fact that a sport-clueless girl can come up with an answer that skunked his, or we can laugh at his competitiveness when he loses at bowling.
Okay. So his frustration tolerance level is pretty low at times. But he works his butt off to do right by his kids. He gets up with us every morning to help get the kids ready for school. He lets me sleep in more often than he gets to himself. When we went through our years of sleeplessness, we would take turns at getting up with Will. When we have a poop accident in the house, he's there with the carpet cleaner. When the kids are restless and I need an empty house so that I can do some housework, he single-handedly will haul all three boys off to a park or the pool- something I would NEVER do on my own. When we set up the waterslide in the backyard, he's out there with the kids making a fool of himself as he bellyflops to the bottom. He's the one sweating bullets on a hot day with a boy's hand in each of his and one hanging off his back.
Most of all, Jonathan is still the same guy I loved and hated in the 7th grade. He's still my best friend, even if our thinking does not always follow the same path. When it comes down to it, there's no one else I'd rather be on this journey with.
Monday, April 20, 2009
Autism Awareness #6 - Awareness vs. Accommodation & Support = Action
There is a campaign in the UK called
Particularly in the blogging world, I often read Aspies and people on the Spectrum who are very upset that they are not represented fairly. Many of them do not want to be regarded as puzzle pieces, or mysterious, or people who require fixing or who need the pity of others. When I read about their views, I am reminded that someday, my boys may feel that very same way. I don't want to view them as any of these either, but I do want to support them in any way that I possibly can. I have said before that the day my boys can communicate to me that they want me to back off from whatever I am doing that is offensive to them, I will do so. But you damn well better bet that until that happens, I will do everything in my power to continue to work on giving them that voice to tell me off with.
I just recently read from a blog that is devoting much of their musings to countering April's Autism Awareness campaigning with the argument that awareness is not needed, but support and accommodation are for people who are already living with autism. They raise some very valid points. Here is a blurb from one of her own campaign posters:
But raising Awareness is the only way you can share your views to educate society and effect change. I will continue to do what I can to change the old stereotypes that are out there, so that my boys may live in a world where bigotry, bullying and abuse may never affect them. I will continue to pass on whatever information and knowledge I may learn to parents who are just entering this world of autism, so that they may be better prepared for the challenges that they will need to overcome to support their children. I think we all have a responsibility to do this. Call it awareness, call it accommodation, call it support. The root of all these words is Action. As long as people are doing something and not sitting on their butts crying about it, I don't care what word they use. * Please note that I am not being disrespectful to anyone who may be dealing with this diagnosis who may be grieving. I believe that it is a stage that many families go through. But hopefully it is only a stage and then you move on and get on with supporting the person you love who has autism.
I will close this off with a video that I just watched from the I Exist campaign. I will forewarn you that it may be difficult to watch for some. Please pass the link to this blog forward to continue our efforts to think differently about autism.
Action
I Exist that was launched in 2008 in an effort to change the attitudes about people with Autism and to improve the lives of adults with Autism and Asperger's Syndrome.Particularly in the blogging world, I often read Aspies and people on the Spectrum who are very upset that they are not represented fairly. Many of them do not want to be regarded as puzzle pieces, or mysterious, or people who require fixing or who need the pity of others. When I read about their views, I am reminded that someday, my boys may feel that very same way. I don't want to view them as any of these either, but I do want to support them in any way that I possibly can. I have said before that the day my boys can communicate to me that they want me to back off from whatever I am doing that is offensive to them, I will do so. But you damn well better bet that until that happens, I will do everything in my power to continue to work on giving them that voice to tell me off with.
I just recently read from a blog that is devoting much of their musings to countering April's Autism Awareness campaigning with the argument that awareness is not needed, but support and accommodation are for people who are already living with autism. They raise some very valid points. Here is a blurb from one of her own campaign posters:
"...instead of "walking for autism", please consider walking alongside someone who is autistic. You can offer support in many ways: perhaps by reducing sensory stimuli in the environment you share, or waiting patiently for the person to process your questions. Or you might choose to join a cause of importance to autistic adults, such as efforts to stop the use of restraints in schools. Including us in decisions that will affect our lives and well being is good, too!" (Asperger Square 8)I respect her feelings and I would hope that my boys may grow to have a voice such as hers. I hope that she would respect my feelings that raising Autism Awareness still has a place. I think that there is room for both in our society. Action and support are most definitely in need for adults on the Spectrum.
But raising Awareness is the only way you can share your views to educate society and effect change. I will continue to do what I can to change the old stereotypes that are out there, so that my boys may live in a world where bigotry, bullying and abuse may never affect them. I will continue to pass on whatever information and knowledge I may learn to parents who are just entering this world of autism, so that they may be better prepared for the challenges that they will need to overcome to support their children. I think we all have a responsibility to do this. Call it awareness, call it accommodation, call it support. The root of all these words is Action. As long as people are doing something and not sitting on their butts crying about it, I don't care what word they use. * Please note that I am not being disrespectful to anyone who may be dealing with this diagnosis who may be grieving. I believe that it is a stage that many families go through. But hopefully it is only a stage and then you move on and get on with supporting the person you love who has autism.I will close this off with a video that I just watched from the I Exist campaign. I will forewarn you that it may be difficult to watch for some. Please pass the link to this blog forward to continue our efforts to think differently about autism.
Action
Sunday, April 19, 2009
Stacey's Sunday BandCamp
I hate when I do that. You let one day go without finishing a blog entry, thinking you'll do it when your eyes are rested the next morning because they kept closing that night while you were writing and you typed kkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk
then woke up with a start. So the next morning you go to finish the post and you forget what your train of thought was. So then you think "I'll come up with something better and do it after the kids go to bed". But then you have guests staying at your home and everyone wants time on your laptop and you're too lazy to go up or downstairs to one of the two other computers in your house, so instead you make excuses and you let another day pass without posting. So here you are a week later and you haven't done the promised Autism Awareness Items and you have a big guilt ball in your stomach, making it difficult to sit comfortably while you type this and you realize that you have another excuse not to write the post but then remember that the purpose of your post to begin with, was to write about no longer making excuses. You like how I keep writing YOU when really this is ME I'm talking about? Looks like another effort to avoid facing the music. So I hate when I do that.
So much has gone on this past week and I don't know where to start, so instead I'm going to ramble. I think it's Mama Kat who I saw rambling, but it was on a Friday and I thought what a great idea it was to plug in all of the things you wanted to BandCamp about to explain what went on during the week.
And we begin...
1) My birthday is coming up on May 12th. Mark your calendars. Am turning the big 3-5. This year it looks like my birthday will fall two days after Mother's Day. So... no excuse for the combo-holiday. Two separate days just pour moi. So I've got a Wish List. Really, this is a list for hubby so he has no excuses. But it's also a gentle nudge if anyone feels so generous as to want to reward this hard working mama for all of her efforts. ha!
a)
This is Matt & Nat's new Samsara line of bags. I covet this bag. It's the Sarnia Pebble Handbag in Plum. It's my understanding that they went exclusive to Holt Renfrew last year in Canada, but lucky for us, Samsara is their new junior line and this bag sits in one of my favourite shops in Calgary- MardaLoop's Wanderlust.
b) for Jonathan to call our cable company and get it installed in our bedroom
c) CASH $$$ - Dad, if you're reading this -- all I want is CASH to put towards my trip to Chicago. Pretty please? I love you Daddy.
d)
e) And the biggies that I'll never get but will list anyways - a decent treadmill and for a magic tree to grow in our yard blooming thousand dollar bills to pay for us to have all of our carpet pulled and hardwood (or laminate) installed AFTER we repair the hole in our bathroom ceiling and replace all the kids' rooms' windows before the frames rot out.
2) As Jake said to someone yesterday "they're such good friends that they are really family"- Dana and Emily flew out from Ontario to spend 9 days with us this past week. Jonathan and Jake were on Spring Break and we decided to give the twins (and Mommy) a break as well from school and therapy. We had so much fun! A great part of what made the week so successful was that we created a new monthly visual schedule for Will. We want to teach him the concept of time and also to have a visual representation of activities so that he can see whether he has school or therapy that day, and to look in days ahead to see what big events are coming up. Every night he X's out the day and removes the pictures that were on it and the next morning we take the time to go to the calendar and see what's on the agenda.
This monthly calendar is complimented by a daily visual agenda that shows a sequence of what we will be doing that day. It helped us so much to curb Will's impatience at wanting everything NOW! when he could see that it was coming.
3) Owen lost his first tooth!!!! I had only realized a few weeks back that it was loose and I went to check it two days ago and it fell out in my hand. I'm sure if I hadn't caught it, he would have swallowed it and probably not have noticed. Not nearly as dramatic as Jake's first loss
4) I have reintroduced casein (mainly dairy) into Will's diet and have seen NO ill effects. I won't be going overboard with the dairy for him, but at least now we have some more options with food for him. He's thrilled to have cheese so it certainly has made pizza more interesting. I know that we cannot do the same for Owen. He has an immediate eczema flare-up at any contact with dairy products. For Will- we will remain artificial dye free and gluten free. I am 100% positive that whenever he has any infraction with these foods, his behaviour goes out of control, the hyperactivity returns, his focus is shot and his OCD is nutty. It's not perfected, but it sure is nice to have a sense of whether we are on the right track or not.
5) This one is gross, but I ripped off my big toenail. By accident of course, because who would do that on purpose?? I was washing my floors on my hands and knees and backed up, catching my toe on the edge of a door frame. Tore it right to the quick. Oh my gosh. I saw stars and it's been doing the Fred Flintstone throb ever since. Painful.
6) Jonathan and I have made some huge lifestyle changes since March 6th where eating and exercise is concerned. I have lost 19.4 lbs. (can't forget those 4 ounces) and Jonathan has lost 30!!! He has been running for an hour nearly everyday and it's just been falling off him. Slow and steady wins the race says I. It feels really good because it doesn't feel like a diet, it just feels like new life. We'll see!
7) Have I told you that Jake is a reading dynamo? He's reading at a grade 5 level (he's in the 2nd grade) and he gets through chapter books in a matter of an hour. I'm so proud that I've raised a reader.
8) Will has a new expression. Jake was telling a story about something disgusting and Will copied him in saying "ewwww gross!" and laughing hysterically. We thought it was cute but never thought he would know how to use the expression appropriately afterwards. As always, Will amazes us and he now uses it frequently. Especially in this household, there is always opportunity to say it.
9) Matilda the pug is going deaf. I think she has lost most of her hearing. She no longer hears the doorbell and often sleeps right through people coming into the room. Poor Mattie.
10) Our Gamma is returning next weekend! Hallelujah! We have been without my Gram in the house since February 2nd after learning she had had a silent heart attack and it kept her on an extended return to Ontario until she recuperated and sorted out her health. So she's booked to come back next weekend and thank Gawd. It has not been an easy time around here without her extra set of eyes. Can't wait to see the boys' reactions when she comes back.
If you could see through the blurry image of today's date on the monthly calendar- there's a pic of Sharon, Lois and Bram. Which means I am off to see the concert with the boys right now! (minus Lois who is no longer performing). Thanks for hanging in through that BandCamp
then woke up with a start. So the next morning you go to finish the post and you forget what your train of thought was. So then you think "I'll come up with something better and do it after the kids go to bed". But then you have guests staying at your home and everyone wants time on your laptop and you're too lazy to go up or downstairs to one of the two other computers in your house, so instead you make excuses and you let another day pass without posting. So here you are a week later and you haven't done the promised Autism Awareness Items and you have a big guilt ball in your stomach, making it difficult to sit comfortably while you type this and you realize that you have another excuse not to write the post but then remember that the purpose of your post to begin with, was to write about no longer making excuses. You like how I keep writing YOU when really this is ME I'm talking about? Looks like another effort to avoid facing the music. So I hate when I do that.
So much has gone on this past week and I don't know where to start, so instead I'm going to ramble. I think it's Mama Kat who I saw rambling, but it was on a Friday and I thought what a great idea it was to plug in all of the things you wanted to BandCamp about to explain what went on during the week.
My Definition of BandCamp: reference to American Pie when the Michelle Flaherty character goes on and on and on "and this one time at band camp....". I've somehow adopted that expression over the years to refer to my rambling when I hear myself talking and I can't shut up or stop for air. I just realized how based on the American Pie reference, some might assume that BandCamp refers to something inappropriately sexual, but I assure you- it does not. So in this blog, you now know that BandCamp means 'Stacey's babbling and won't shut up'.
And we begin...
1) My birthday is coming up on May 12th. Mark your calendars. Am turning the big 3-5. This year it looks like my birthday will fall two days after Mother's Day. So... no excuse for the combo-holiday. Two separate days just pour moi. So I've got a Wish List. Really, this is a list for hubby so he has no excuses. But it's also a gentle nudge if anyone feels so generous as to want to reward this hard working mama for all of her efforts. ha!
a)
This is Matt & Nat's new Samsara line of bags. I covet this bag. It's the Sarnia Pebble Handbag in Plum. It's my understanding that they went exclusive to Holt Renfrew last year in Canada, but lucky for us, Samsara is their new junior line and this bag sits in one of my favourite shops in Calgary- MardaLoop's Wanderlust.b) for Jonathan to call our cable company and get it installed in our bedroom
c) CASH $$$ - Dad, if you're reading this -- all I want is CASH to put towards my trip to Chicago. Pretty please? I love you Daddy.
d)
e) And the biggies that I'll never get but will list anyways - a decent treadmill and for a magic tree to grow in our yard blooming thousand dollar bills to pay for us to have all of our carpet pulled and hardwood (or laminate) installed AFTER we repair the hole in our bathroom ceiling and replace all the kids' rooms' windows before the frames rot out.
2) As Jake said to someone yesterday "they're such good friends that they are really family"- Dana and Emily flew out from Ontario to spend 9 days with us this past week. Jonathan and Jake were on Spring Break and we decided to give the twins (and Mommy) a break as well from school and therapy. We had so much fun! A great part of what made the week so successful was that we created a new monthly visual schedule for Will. We want to teach him the concept of time and also to have a visual representation of activities so that he can see whether he has school or therapy that day, and to look in days ahead to see what big events are coming up. Every night he X's out the day and removes the pictures that were on it and the next morning we take the time to go to the calendar and see what's on the agenda.
This monthly calendar is complimented by a daily visual agenda that shows a sequence of what we will be doing that day. It helped us so much to curb Will's impatience at wanting everything NOW! when he could see that it was coming.
3) Owen lost his first tooth!!!! I had only realized a few weeks back that it was loose and I went to check it two days ago and it fell out in my hand. I'm sure if I hadn't caught it, he would have swallowed it and probably not have noticed. Not nearly as dramatic as Jake's first loss
HERE for a reminder of how that went down. I'm sad. My baby is growing up.4) I have reintroduced casein (mainly dairy) into Will's diet and have seen NO ill effects. I won't be going overboard with the dairy for him, but at least now we have some more options with food for him. He's thrilled to have cheese so it certainly has made pizza more interesting. I know that we cannot do the same for Owen. He has an immediate eczema flare-up at any contact with dairy products. For Will- we will remain artificial dye free and gluten free. I am 100% positive that whenever he has any infraction with these foods, his behaviour goes out of control, the hyperactivity returns, his focus is shot and his OCD is nutty. It's not perfected, but it sure is nice to have a sense of whether we are on the right track or not.
5) This one is gross, but I ripped off my big toenail. By accident of course, because who would do that on purpose?? I was washing my floors on my hands and knees and backed up, catching my toe on the edge of a door frame. Tore it right to the quick. Oh my gosh. I saw stars and it's been doing the Fred Flintstone throb ever since. Painful.
6) Jonathan and I have made some huge lifestyle changes since March 6th where eating and exercise is concerned. I have lost 19.4 lbs. (can't forget those 4 ounces) and Jonathan has lost 30!!! He has been running for an hour nearly everyday and it's just been falling off him. Slow and steady wins the race says I. It feels really good because it doesn't feel like a diet, it just feels like new life. We'll see!
7) Have I told you that Jake is a reading dynamo? He's reading at a grade 5 level (he's in the 2nd grade) and he gets through chapter books in a matter of an hour. I'm so proud that I've raised a reader.
8) Will has a new expression. Jake was telling a story about something disgusting and Will copied him in saying "ewwww gross!" and laughing hysterically. We thought it was cute but never thought he would know how to use the expression appropriately afterwards. As always, Will amazes us and he now uses it frequently. Especially in this household, there is always opportunity to say it.
9) Matilda the pug is going deaf. I think she has lost most of her hearing. She no longer hears the doorbell and often sleeps right through people coming into the room. Poor Mattie.
10) Our Gamma is returning next weekend! Hallelujah! We have been without my Gram in the house since February 2nd after learning she had had a silent heart attack and it kept her on an extended return to Ontario until she recuperated and sorted out her health. So she's booked to come back next weekend and thank Gawd. It has not been an easy time around here without her extra set of eyes. Can't wait to see the boys' reactions when she comes back.
If you could see through the blurry image of today's date on the monthly calendar- there's a pic of Sharon, Lois and Bram. Which means I am off to see the concert with the boys right now! (minus Lois who is no longer performing). Thanks for hanging in through that BandCamp
Saturday, April 18, 2009
SOOC - with Will's finger on the trigger
I'm finding this Saturday a little difficult for coming up with fresh thoughts without going into playing catch-up for the week that I slacked from blogging while we had houseguests. So these blog games are the perfect solution.
Slurping Life has a cool idea called Straight Out of Camera, no editing allowed (no worries here since I am NO photographer). I just thought it was a great coincidence that on Easter Sunday, I put the camera in Will's hands to see what he could do (with me behind him).
Lisa -
posing for Will
best picture ever
because she probably never dreamed
that anyone would ever see this
Six Word Saturday
Am supposed to describe my life in six words. Instead, I'll describe my last week in six words.
6 words= Dana, Will, Jonathan, Jake, Owen & Emily
I love that my life last week was so simple. It did not include, work, school or therapy. Nor did it include stress, pressure or deadlines. It did include a lot of fun, new experiences and great successes.
Gotta love Six Word Saturdays and gotta love holidays!
Gotta love Six Word Saturdays and gotta love holidays!
Tuesday, April 14, 2009
Willy Moment
Just found a naked Will scrunched up with knees to chin in the bathroom sink, taking a bath. Can we check "bathing self independently" as mastered in his ABA program Life Skills?
Sunday, April 12, 2009
Magic Marker Monday
It's Magic Marker Monday again, hosted by 5 Minutes for Special Needs. Time to share what crafty stuff the kids have been entertaining us with.
The Marketing Material - Take note of the words written below the caption photos. Crack me up. Emily's lovely pose on the left is especially professional looking.Most every holiday, we celebrate the day joined by a couple of other families. It has become a tradition, albeit a somewhat painful tradition, that Jake puts on a show for everyone. He takes it very seriously. In preparation for Easter, Jake spent at least a week rehearsing in the garage, writing the script and practicing the songs. You would think that after that much effort the play would roll like a fine tuned machine. Let's just say it's the show that never ends and Jake always somehow manages to be the star of the production, with his friends going along for the ride.
Jake isn't our only talented artist of the family. Will and Owen are catching up with their own beautiful Easter pieces made at preschool.
I am not an artist, but I have always found that getting inspired by colours or patterns, using your imagination to create something beautiful or manipulating language to create emotion- i find it all very cathartic. It can be very frustrating when you have a vision in your head of what you would like to create, but your skills are lacking to produce it. It saddens me to wonder if Owen and Will have these same feelings of wanting to produce something beautiful, but not the skills to make it happen. Do they look at the written word and wish that they could put pen to paper and shape those letters? Or do they have stories and ideas that they want to share with the world, but not have the language to express it? Or do the boys have pictures in their minds that could be make them the next Picassos, but they just don't have the strength required for the grasp to hold the paintbrush properly? I believe that Will feels some frustration when he tries so hard over and over again to mimic the dance moves he sees on his videos, or to spell his name. I only hope their determination and perseverance stays with them to keep on trying, because it's worth the reward. I suppose it is our job as parents to continue to lay praise on our children for their every effort so that they remain inspired and motivated to keep at it. I'm proud of their Easter efforts.
Wednesday, April 08, 2009
Tuesday, April 07, 2009
Autism Awareness #4 - Jobs in the field of Autism
Today I was featured over at
I have often said that I am always surprised when I find out that people are reading what I'm writing. Oftentimes, I type, hit send and just assume that maybe a few family members of friends might check in to see how the boys are doing. Every now and then I get messages from people telling us that our words have made an impact on their thinking. I am always touched by the kind words, but am also embarrassed that anyone thinks we are any different, or any better than anyone else. Honestly-we are just parents trying to figure it out as we go and the only thing that may make me stand out is that I have a big mouth, or a writer's itch.. to spread the word and air out our some of our private moments, thoughts and fears.
No matter how much we try to put a positive spin on autism, the truth is that it still sucks. It does. It sucks that my boys have a voice that can't yet be heard. That people can't always see the beauty that lies within, see their intelligence and sense of humour. I won't go on and on. What does make it somewhat better, is knowing that they have touched so many people. I have cousins who have chosen psychology and child and youth services as their studies of choice in college and university, with the hopes of someday working in the field with other children with autism. Three of our 'adopted' family members who started out as young girls providing us with respite support when we were back in Ontario.. have now all gone on to pursue studies and careers in the field as well. Bronwyn is even tattooed by a Willow Tree in honour of "her boys". The thought that my boys and our family has had such a tremendous impact on all of these young women really makes me proud. Proud that Will, Owen and Jake have given back.
Proof again that the world has much to learn and benefit from having them in their lives.. Proof that people with autism have so much to offer. Proof that these valuable members of society should not be shut away or 'kept with their own'.
I'll get off my soapbox now. I thought I would try and list all of the professionals that have come into contact with my boys since our journey began. Perhaps it will provide someone with ideas if they were contemplating working with kids with autism.
- Behavioural Aide in various areas of therapy: floortime, VBA (Verbal Behaviour Approach), ABA (Applied Behaviour Analysis), IBI (Intensive Behavioural Intervention), Pivotal Response Therapy, TEACCH, Sensory Integration, etc.
** For parents researching different forms of therapy for their children, I would recommend reading "The Complete Guide to Autism Treatments. A Parent's Handbook: make sure your child gets what works!" by S.K. Freeman or contact your local Autism Association for a list of care providers that may be available to you.
- Play Therapist - refer to: this information
- Music Therapist - refer to: this information
- Occupational Therapist - refer to: this information
- Physical Therapist - refer to: this information
- Speech Pathologist or Communication Disorder Assistant - refer to: this information
- Clinical Child Psychologist, Developmental Pediatrician, Educational Psychologist
- Educational Assistant, Teacher's Assistant, Special Education Teacher, ECE Worker (Early Childhood Education)
- Social Worker, Child Youth Worker
- Cranio-Sacral Therapist, Naturopath, Naturopathic Physician
- Developmental Optometrist - refer to: this information
I'm sure that you could take any profession and cater to working with people with autism. There is definitely a need for different service providers to specialize in working in this field (ie. financial planning, coaching sports, teaching the arts, hairdressers, animal therapy, etc.). I sometimes worry when I hear young people saying that they want to "work with kids with autism" and they limit themselves to assuming that can only mean working as a 1:1 aide in behaviour therapy. Many of our previous aides have come into the job and used it as a stepping stone to a specialization, not realizing that those jobs were out there until they worked with our kids. This is so difficult for our kids and for our agencies after all the training that they have put into their staff. Perhaps a little more research into all the above-mentioned avenues of study/work and they can get a jump start on the education required to get those jobs.
Hope this helps someone and thanks again to Half Past Kissin' Time!
Half Past Kissin' Time as a contribution to raise Autism Awareness. I really appreciate all of the people who came by to take a look and I hope we were able to provide you with some new understanding, or maybe we were able to change your misconceptions.I have often said that I am always surprised when I find out that people are reading what I'm writing. Oftentimes, I type, hit send and just assume that maybe a few family members of friends might check in to see how the boys are doing. Every now and then I get messages from people telling us that our words have made an impact on their thinking. I am always touched by the kind words, but am also embarrassed that anyone thinks we are any different, or any better than anyone else. Honestly-we are just parents trying to figure it out as we go and the only thing that may make me stand out is that I have a big mouth, or a writer's itch.. to spread the word and air out our some of our private moments, thoughts and fears.
No matter how much we try to put a positive spin on autism, the truth is that it still sucks. It does. It sucks that my boys have a voice that can't yet be heard. That people can't always see the beauty that lies within, see their intelligence and sense of humour. I won't go on and on. What does make it somewhat better, is knowing that they have touched so many people. I have cousins who have chosen psychology and child and youth services as their studies of choice in college and university, with the hopes of someday working in the field with other children with autism. Three of our 'adopted' family members who started out as young girls providing us with respite support when we were back in Ontario.. have now all gone on to pursue studies and careers in the field as well. Bronwyn is even tattooed by a Willow Tree in honour of "her boys". The thought that my boys and our family has had such a tremendous impact on all of these young women really makes me proud. Proud that Will, Owen and Jake have given back.
Proof again that the world has much to learn and benefit from having them in their lives.. Proof that people with autism have so much to offer. Proof that these valuable members of society should not be shut away or 'kept with their own'.
I'll get off my soapbox now. I thought I would try and list all of the professionals that have come into contact with my boys since our journey began. Perhaps it will provide someone with ideas if they were contemplating working with kids with autism.
- Behavioural Aide in various areas of therapy: floortime, VBA (Verbal Behaviour Approach), ABA (Applied Behaviour Analysis), IBI (Intensive Behavioural Intervention), Pivotal Response Therapy, TEACCH, Sensory Integration, etc.
** For parents researching different forms of therapy for their children, I would recommend reading "The Complete Guide to Autism Treatments. A Parent's Handbook: make sure your child gets what works!" by S.K. Freeman or contact your local Autism Association for a list of care providers that may be available to you.
- Play Therapist - refer to: this information
- Music Therapist - refer to: this information
- Occupational Therapist - refer to: this information
- Physical Therapist - refer to: this information
- Speech Pathologist or Communication Disorder Assistant - refer to: this information
- Clinical Child Psychologist, Developmental Pediatrician, Educational Psychologist
- Educational Assistant, Teacher's Assistant, Special Education Teacher, ECE Worker (Early Childhood Education)
- Social Worker, Child Youth Worker
- Cranio-Sacral Therapist, Naturopath, Naturopathic Physician
- Developmental Optometrist - refer to: this information
I'm sure that you could take any profession and cater to working with people with autism. There is definitely a need for different service providers to specialize in working in this field (ie. financial planning, coaching sports, teaching the arts, hairdressers, animal therapy, etc.). I sometimes worry when I hear young people saying that they want to "work with kids with autism" and they limit themselves to assuming that can only mean working as a 1:1 aide in behaviour therapy. Many of our previous aides have come into the job and used it as a stepping stone to a specialization, not realizing that those jobs were out there until they worked with our kids. This is so difficult for our kids and for our agencies after all the training that they have put into their staff. Perhaps a little more research into all the above-mentioned avenues of study/work and they can get a jump start on the education required to get those jobs.
Hope this helps someone and thanks again to Half Past Kissin' Time!
Monday, April 06, 2009
Autism Awareness #3 - The Warning Signs
First Signs
Over the last four years, I have had so many people ask me what first alerted us to know that something was wrong with the twins, to lead to their diagnosis. I have to preface my response by saying that our early years were not easy. In fact, they were so difficult that they are nearly a cloudy dream that has almost faded from memory. I can say that in retrospect, so many signs were there, but we were probably too tired to notice. It's true that we had an older 'neurotypical' child to compare the twins to, but in our defence, we were told over and over again "it's different with twins. It's a twin thing."
Rather than list all of the signs by assigning them to who experienced what, I'm just going to list them all in point form. This will have to be a first half of a list that will be behaviours and signs that were symptomatic of autism. The second half of the list will come at a later time and will be comprised of medical signs that I NOW believe contributed to the diagnosis, based on my more recent beliefs that autism does not just stem from the brain, but from the gut and body as well.
I couldn't dare break down the signs chronologically as they appeared. I wish I could. But as I say, that time in our lives really was a blur. I can only say that these signs were pretty solid all prior to the age of two for both boys.
- often appeared deaf; did not respond to name, twins did not acknowledge each other
- eyes did not track objects or people's movements
- lack of physical affection, would not tolerate being cuddled or held for length of time
- appeared to be colicky- excessive screaming, fussy, difficult to calm
- could never develop a routine for either boy, sleep schedules were erratic & unpredictable
- introduction to foods did not happen as it should- rejected entire food groups, once they found something they liked they were fixated on that food and we could not even rotate brands
- PICA- eating, licking non-food items including bricks, threads, dirt, rocks, crayons, etc.
- sought out different textures- ran fingernails over pieces of paper, along carpet, fabrics, etc.
- constantly covered ears with both hands
- flicking of fingers in front of face
- no interest in toys, activities (even bubbles) or other children
- fixation on particular objects (pulling threads out of couch), television
- toe-walking, excessive jumping on the spot, flapping of hands
- strange vocalizations
- lack of eye contact
- had a couple of words, appeared for a day, then disappeared
- no communication. used adult's hand as if it was a tool or extension of their own arm and dragged around to reach for desired object.
- TEMPER TANTRUMS!!!!!!!! could last for hours and hours with no explanation for the cause. No self-regulation to calm down.
- excessive hyperactivity
- lethargy
- 'inappropriate' emotional responses- laughing/giggling or crying for unexplained reason
- extreme difficulty with transitions from place to place or activity to activity
- did not try to 'please' parents in any way
- could not act on any commands/receptive instructions
- zero imitation skills
- zero attempts at labeling (pointing to objects and saying "huh?" or other typical baby commenting
- seeking out of dangerous stimuli (ie. if Will pinched his finger in a door, he would stick it back in over and over again)
- appeared to be a lack of 'feeling' when in pain.
- not hitting milestones for gross motor or fine motor skills (climbing stairs, jumping, grasp, etc. not typical)
- extreme fixation or addiction to preferred items - milk bottle had to be specific colour/type
- lost in their own world. Had own agenda. Oblivious to world around them.
- extreme, unexplained fears
- huge anxiety
- sought out deep pressure.. would often try to squish behind people seated in chairs, or bury himself under tight places like the sofa or bed
- like to cocoon himself in heavy bedding
It makes me sad to write this. Looking back I suppose to anyone else, it would have seemed obvious. No point looking backwards. I just hope this might help another parent, family member or friend, to help catch the signs early so that a child might seek out an early diagnosis.
Over the last four years, I have had so many people ask me what first alerted us to know that something was wrong with the twins, to lead to their diagnosis. I have to preface my response by saying that our early years were not easy. In fact, they were so difficult that they are nearly a cloudy dream that has almost faded from memory. I can say that in retrospect, so many signs were there, but we were probably too tired to notice. It's true that we had an older 'neurotypical' child to compare the twins to, but in our defence, we were told over and over again "it's different with twins. It's a twin thing."
Rather than list all of the signs by assigning them to who experienced what, I'm just going to list them all in point form. This will have to be a first half of a list that will be behaviours and signs that were symptomatic of autism. The second half of the list will come at a later time and will be comprised of medical signs that I NOW believe contributed to the diagnosis, based on my more recent beliefs that autism does not just stem from the brain, but from the gut and body as well.
I couldn't dare break down the signs chronologically as they appeared. I wish I could. But as I say, that time in our lives really was a blur. I can only say that these signs were pretty solid all prior to the age of two for both boys.
- often appeared deaf; did not respond to name, twins did not acknowledge each other
- eyes did not track objects or people's movements
- lack of physical affection, would not tolerate being cuddled or held for length of time
- appeared to be colicky- excessive screaming, fussy, difficult to calm
- could never develop a routine for either boy, sleep schedules were erratic & unpredictable
- introduction to foods did not happen as it should- rejected entire food groups, once they found something they liked they were fixated on that food and we could not even rotate brands
- PICA- eating, licking non-food items including bricks, threads, dirt, rocks, crayons, etc.
- sought out different textures- ran fingernails over pieces of paper, along carpet, fabrics, etc.
- constantly covered ears with both hands
- flicking of fingers in front of face
- no interest in toys, activities (even bubbles) or other children
- fixation on particular objects (pulling threads out of couch), television
- toe-walking, excessive jumping on the spot, flapping of hands
- strange vocalizations
- lack of eye contact
- had a couple of words, appeared for a day, then disappeared
- no communication. used adult's hand as if it was a tool or extension of their own arm and dragged around to reach for desired object.
- TEMPER TANTRUMS!!!!!!!! could last for hours and hours with no explanation for the cause. No self-regulation to calm down.
- excessive hyperactivity
- lethargy
- 'inappropriate' emotional responses- laughing/giggling or crying for unexplained reason
- extreme difficulty with transitions from place to place or activity to activity
- did not try to 'please' parents in any way
- could not act on any commands/receptive instructions
- zero imitation skills
- zero attempts at labeling (pointing to objects and saying "huh?" or other typical baby commenting
- seeking out of dangerous stimuli (ie. if Will pinched his finger in a door, he would stick it back in over and over again)
- appeared to be a lack of 'feeling' when in pain.
- not hitting milestones for gross motor or fine motor skills (climbing stairs, jumping, grasp, etc. not typical)
- extreme fixation or addiction to preferred items - milk bottle had to be specific colour/type
- lost in their own world. Had own agenda. Oblivious to world around them.
- extreme, unexplained fears
- huge anxiety
- sought out deep pressure.. would often try to squish behind people seated in chairs, or bury himself under tight places like the sofa or bed
- like to cocoon himself in heavy bedding
It makes me sad to write this. Looking back I suppose to anyone else, it would have seemed obvious. No point looking backwards. I just hope this might help another parent, family member or friend, to help catch the signs early so that a child might seek out an early diagnosis.
Crafty Kids
It's Magic Marker Monday, hosted by Michelle at 5 Minutes for Special Needs. We're going to share some kids' arts and in my family, our three boys are always thrilled to do arts and crafts and show it off to everyone.
Owen's masterpiece was a craft from preschool. Who doesn't love Bunny-Eggs at Easter? I'm especially proud at all of his fine motor effort in tracing the letters of his name.
Will just came home from his new off-site 'typical' preschool, with a craft he just made. Isn't it cute? Not sure if it's a worm or a snake, but it sure is tasty if Will's numerous attempts to eat chunks out of him is any indication. I wonder if it's gluten-free? :S
Jacob's 2nd grade class has a class "pet" (aka stuffed animal) named Olive. I believe she's supposed to be named after Olive the Reindeer.
Each child gets to take Olive and her journal home for a few days. Olive is expected to participate in all of the family's activities and have her photo taken with the child. He has to journal everything they've done together. Jake drew her picture as a memento of their special time together. He very accurately included an outfit that he made for her, after cutting up some socks from the unmatched sock drawer.
I'm thrilled that I've got kids who love crafts as much as I do. I think I'm going to love Magic Marker Mondays.
Owen's masterpiece was a craft from preschool. Who doesn't love Bunny-Eggs at Easter? I'm especially proud at all of his fine motor effort in tracing the letters of his name.
Will just came home from his new off-site 'typical' preschool, with a craft he just made. Isn't it cute? Not sure if it's a worm or a snake, but it sure is tasty if Will's numerous attempts to eat chunks out of him is any indication. I wonder if it's gluten-free? :S
Jacob's 2nd grade class has a class "pet" (aka stuffed animal) named Olive. I believe she's supposed to be named after Olive the Reindeer.
Each child gets to take Olive and her journal home for a few days. Olive is expected to participate in all of the family's activities and have her photo taken with the child. He has to journal everything they've done together. Jake drew her picture as a memento of their special time together. He very accurately included an outfit that he made for her, after cutting up some socks from the unmatched sock drawer.I'm thrilled that I've got kids who love crafts as much as I do. I think I'm going to love Magic Marker Mondays.
Sunday, April 05, 2009
Autism Awareness #2 - Holland
As promised, I am posting everyday in honour of Autism Awareness Month.
The following was written over two decades ago, has been translated into numerous languages and continues to have the same powerful effect today.
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The following was written over two decades ago, has been translated into numerous languages and continues to have the same powerful effect today.
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Friday, May 19, 2006
HollandA woman named Emily Perl Kingsley wrote an essay that has greatly helped me to keep things in perspective when I feel overwhelmed with sadness for the loss of the future I thought we would have with our boys. I believe that she is the mother of a child who has Down's Syndrome.
Source
Welcome To Holland
byEmily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
April 6th Edition of The Simple Woman's Daybook
These writing prompts are available from Simple Woman's Daybook where each Monday we're invited to join in celebrating the beauty of everyday moments around us.FOR TODAY ... the eve before Monday, April 6th
Outside my window... Night has fallen and I can still see the glow of the snow on the ground, although its edges have shrunk back after a full day of spring sunshine. The shadows of the thirty year old trees rock in the breeze and I wonder where our busy squirrels sleep at night.
I am thinking... I have written more in the last week than I have in months and it feels good. I feel like I'm where I have always wanted to be.
I am thankful for... my husband and the patience and support he has shown me this past week.
From the kitchen... all the ingredients are laid out to make gluten-casein free banana chocolate chip muffins for tomorrow morning. Tonight there is nothing out to eat.. because I'm sticking to my plan and there is no snacking after 7pm.
I am wearing... fuzzy PJ bottoms and an old, overstretched long sleeved t
I am creating... a new vision for myself. I feel like I have made some big life decisions and acted on them in the last several weeks. I'm excited about the future.
I am going... to "stick to the plan"
I am reading... "The Book of Negroes" by Lawrence Hill for my book group and "Healing and Preventing Autism" by Jenny McCarthy & Jerry Kartzinel
I am hoping... that this week is less stressful than the last.
I am hearing... silence. And loving it.
Around the house... piles of clutter on every possible surface that will never shrink. As soon as it is put away, it is soon replaced by more.
One of my favorite things... my bed that waits for me upstairs. It is King-sized with a pillow top mattress with the perfect shade of blue sheets and pillows that are calling to me now.
A few plans for the rest of the week: to get through it without losing my temper. House needs to be cleaned from top to bottom in anticipation of our house guests who arrive on Friday!!! (Dana and Emily).
Here is picture thought I am sharing... my hometown of Bowmanville. Because I'm feeling kinda homesick and I'm wishing I had an icy glass of Hard Apple Cider from Archibald's. A not-unusual feeling at this time of night.
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