With but a few hours left of 2007, it is time indeed for the yearly wrap up.
2007 has been for me the year of insight. Certainly a counterpoint to the massive challenges that 2006 had to offer, it has been the year for me to 'rise and shine'. As it began I was very much in the adjustment period of dealing with my son's diagnoses and finally laying aside my anger and resentment in regards to my ex. The prior months (Fall 2006) probably saw me at my worst emotionally, mentally and physically as I wrestled with everything at once. But as 2007 dawned I was finally finding sure footing again.
Spring and summer and fall again brought changes, as always...but this year I was prepared and self-assured...and each transition was smoother than the next.
As I head into 2008 with my handy list of resolutions, I am amazed at my own personal growth. I'm finally beginning to like myself for who I am, and how I look and what I am capable of. Which for me, is somewhat unbelievable!?! :) I really feel as though I now have a much more accurate image of myself and am thus able to make clearer decisions as to what I would like to change.
As with most, my focus in the year ahead is self-improvement. For me that means releasing some baggage, erasing some bitterness, overcoming my trust issues and allowing myself to be open, kind and friendly once again.
Because I have a clearer idea of who I am and what I have to offer, as I close out 2007 I can truly say I am ready for the future to begin.
31 December, 2007
11 December, 2007
....what do you see...
As you go through your day and slip from one challenge to the next, what's your view? Do you see things in the minute, the detailed, the of-the-moment? Or do you concentrate on the vast, the long-term, the big picture? And which view is healthier?
Is it better to concentrate on the finite or the infinite?
Anyone who knows me well will tell you these things about me: I am super-organized, I am a little OCD, I am detail oriented, I am a planner, I like things in their own time and place.
And, anyone who knows me well will also tell you that because of the above, I have struggled with an impossible desire for perfection and the shock of my child's disability.
But today I concentrate on more of the 'me' stuff...the ways I cause myself more trouble than needed. Those little quirks and tendencies that left unchecked cause me to make things more difficult and stressful than they need to be.
When you wake up in the morning, do you already know what the day will hold, or are you excited for the possibilities of the unknown?
I have spent the greater portion of my life as a list maker and calendar filler extraordinaire. That is, up until my son was born. And then...shock to the system. Irretrievable data loss and memory purge...and all of a sudden no calendar could cover all the events and no list could contain all the needs. Life with my son is simply a matter of 'rolling with the punches'. Every day is totally new and totally unexpected and will no doubt throw me for multiple loops.
And just this past week I finally got "it"! Planning the future is a waste of emotional energy!
See, here's the thing...imagine for a moment that you are me. The phone rings, you/I answer and there is news. Good, bad, neutral...whatever...news. Immediately you/I begin to process the news, compartmentalizing it into nice sizeable chunks. What will happen...how will you/I deal...what to do about it???
Okay, now step back...look, see, there I am freeze-framed in my emotional messiness... Don't you just want to pick me up, shake me and say "chill out, calm down, nothing is changing right this moment!" ?
Thanks for the well-meaning...but there's no need. Because, you see, I've finally done just that to myself!
The phone rang, I answered, and there was the news. Now I'll grant you, in the broad scheme of things yes, it was bad news. But not life-ending, emotional havoc, pack up and flee bad news. And as I listened and felt the usual surge of panic and ovewhelming need to plan it all out...I did the mental 'block pass' and said no to my own emotional overload. For the first time I saw the big picture and realized that nothing was changing that very moment or any time in the near future. For the first time I realized what it meant to file something away for a later date . I don't have to plot out the whole situation...I don't have to prepare for every eventuality and conversation and scuffle. Emotional strength is defined in the ability to face down the challenge in the moment of the battle, not in advance of the battle.
So my newly turned over leaf means that while I recognize the potential for trouble brewing in the future-scape, I no longer need to make it my focus in the present.
Are you allowing the future to have possibility or are you creating it with a pre-conceived mold of what you fear it will be?
Is it better to concentrate on the finite or the infinite?
Anyone who knows me well will tell you these things about me: I am super-organized, I am a little OCD, I am detail oriented, I am a planner, I like things in their own time and place.
And, anyone who knows me well will also tell you that because of the above, I have struggled with an impossible desire for perfection and the shock of my child's disability.
But today I concentrate on more of the 'me' stuff...the ways I cause myself more trouble than needed. Those little quirks and tendencies that left unchecked cause me to make things more difficult and stressful than they need to be.
When you wake up in the morning, do you already know what the day will hold, or are you excited for the possibilities of the unknown?
I have spent the greater portion of my life as a list maker and calendar filler extraordinaire. That is, up until my son was born. And then...shock to the system. Irretrievable data loss and memory purge...and all of a sudden no calendar could cover all the events and no list could contain all the needs. Life with my son is simply a matter of 'rolling with the punches'. Every day is totally new and totally unexpected and will no doubt throw me for multiple loops.
And just this past week I finally got "it"! Planning the future is a waste of emotional energy!
See, here's the thing...imagine for a moment that you are me. The phone rings, you/I answer and there is news. Good, bad, neutral...whatever...news. Immediately you/I begin to process the news, compartmentalizing it into nice sizeable chunks. What will happen...how will you/I deal...what to do about it???
Okay, now step back...look, see, there I am freeze-framed in my emotional messiness... Don't you just want to pick me up, shake me and say "chill out, calm down, nothing is changing right this moment!" ?
Thanks for the well-meaning...but there's no need. Because, you see, I've finally done just that to myself!
The phone rang, I answered, and there was the news. Now I'll grant you, in the broad scheme of things yes, it was bad news. But not life-ending, emotional havoc, pack up and flee bad news. And as I listened and felt the usual surge of panic and ovewhelming need to plan it all out...I did the mental 'block pass' and said no to my own emotional overload. For the first time I saw the big picture and realized that nothing was changing that very moment or any time in the near future. For the first time I realized what it meant to file something away for a later date . I don't have to plot out the whole situation...I don't have to prepare for every eventuality and conversation and scuffle. Emotional strength is defined in the ability to face down the challenge in the moment of the battle, not in advance of the battle.
So my newly turned over leaf means that while I recognize the potential for trouble brewing in the future-scape, I no longer need to make it my focus in the present.
Are you allowing the future to have possibility or are you creating it with a pre-conceived mold of what you fear it will be?
...quote of the day...
"But history will judge you, and as the years pass, you will ultimately judge yourself, in the extent to which you have used your gifts and talents to lighten and enrich the lives of your fellow men. In your hands lies the future of your world and the fulfillment of the best qualities of your own spirit." Robert F. Kennedy
This quote caught my eye yesterday at the top of the editor's column in a parenting magazine. I read it over several times, and thought it worth sharing. Not only does it present a challenge to us to 'work for the better'...it reminded me that the only 'earthly' judgement worth my regard is my own. At the end of the day I have to decide whether or not I did my best with what I had, or not.
Obviously it is a gross understatement to say that we, as individuals, are multi-faceted. And yet, I make that a point here, because of my current train of thought.
I am first and foremost an individual. Yes, I am a mother...and yes, it is a large part of my identity these days. But to define myself as only 'mother' detracts from all my other skills, talents and interests. And it also reduces my own vision of what I am capable of achieving.
As a mother, I want the best for my child. But as an individual, I want happiness. I believe those two goals can be achieved hand in hand. What I don't believe is that in order to provide my child with the best that I have to offer, I need to sacrifice aspects of my own personality.
Up until the very recent present, I have lived my life fearing criticism. I have been afraid to attract notice, to be perceived as different or unique, and to not suit everyones' images of me. Because of that fear I have gone through these odd cyclical stages....one moment trying to fit the mold, the next rebelling. What makes this sad to realize is that in doing so, I lost track of who I really was. And what I, individually, have to offer.
Thankfully, in that most basic sense of restoring balance, I have a circle of very smart, intuitive and caring friends who ground me in the reality of who I really am. They know me as a friend and a mother, as an artist and performer, as a creator and as a flawed individual. And they remind me that I am all those things and more, when I feel under siege.
As I get older, I realize all the more the need to take accountability in the simplest sense. I make the choices that feel right to me. I put the clothing on that suits my mood. I nurture myself and my child in the way that comes naturally to me. And I pursue those activities which interest me.
It's not about gaining or losing approval. The fundamental key to happiness, I believe, is finally figuring out who you are, what you stand for and chasing after your own dreams.
My dreams are both simple and complex...and at the root of all them lies happiness, contentment and growth.
This quote caught my eye yesterday at the top of the editor's column in a parenting magazine. I read it over several times, and thought it worth sharing. Not only does it present a challenge to us to 'work for the better'...it reminded me that the only 'earthly' judgement worth my regard is my own. At the end of the day I have to decide whether or not I did my best with what I had, or not.
Obviously it is a gross understatement to say that we, as individuals, are multi-faceted. And yet, I make that a point here, because of my current train of thought.
I am first and foremost an individual. Yes, I am a mother...and yes, it is a large part of my identity these days. But to define myself as only 'mother' detracts from all my other skills, talents and interests. And it also reduces my own vision of what I am capable of achieving.
As a mother, I want the best for my child. But as an individual, I want happiness. I believe those two goals can be achieved hand in hand. What I don't believe is that in order to provide my child with the best that I have to offer, I need to sacrifice aspects of my own personality.
Up until the very recent present, I have lived my life fearing criticism. I have been afraid to attract notice, to be perceived as different or unique, and to not suit everyones' images of me. Because of that fear I have gone through these odd cyclical stages....one moment trying to fit the mold, the next rebelling. What makes this sad to realize is that in doing so, I lost track of who I really was. And what I, individually, have to offer.
Thankfully, in that most basic sense of restoring balance, I have a circle of very smart, intuitive and caring friends who ground me in the reality of who I really am. They know me as a friend and a mother, as an artist and performer, as a creator and as a flawed individual. And they remind me that I am all those things and more, when I feel under siege.
As I get older, I realize all the more the need to take accountability in the simplest sense. I make the choices that feel right to me. I put the clothing on that suits my mood. I nurture myself and my child in the way that comes naturally to me. And I pursue those activities which interest me.
It's not about gaining or losing approval. The fundamental key to happiness, I believe, is finally figuring out who you are, what you stand for and chasing after your own dreams.
My dreams are both simple and complex...and at the root of all them lies happiness, contentment and growth.
08 December, 2007
...comfort in a cup, hugs in a blanket, and tissues without tears...
Ok...the week wasn't totally bad. I have some really fabulous friends. And one in particular takes the cake. She sent us a care package with COFFEE (Dunkin' Donuts Hazlenut...the best!!!)and all sorts of assorted goodies, including a handmade gift for the mister man...a knot blanket made out of Spiderman fleece! Cozy, comfy warmness! :) We both love it! And boy, let me tell you, opening a care package in the middle of your living room with the mister man doing some sort of crazy bouncy happy dance is about as good as it gets. Feel the love! And we managed to make it all the way to the following morning before digging in to the biscuit mix and coffee.
Admittedly, I did "re-wrap" one of the goodies in the care package, so I would have something under the Christmas Tree to unwrap!
We also got a lovely package from my mom for St. Nikolaus' Day. Kudos on the presentation, despite, I'm sure, the U.S.P.S.'s best efforts to shake, rattle and roll the contents to smithereens! Finally, I have a flat wire whisk...all the better to cook with! Thanks Mom! And she sent the mister man the coolest craft "my tissue art"...comes with precut colored tissue paper squares and pre-sticky-ed shapes to stick them on to make cute artwork. Fun and (potentially) mess-free! He is so psyched for his friend Nick to come over for arts'n'crafts. Now if only I could get her to the comfort level of computer savviness that is required to read this blog! Hah!
Speaking of...over the summer we had a weekly arts'n'crafts session with friends here...and boy did we churn out some masterpieces. Honestly, I always knew I was creative (musical theatre, much?) but I never really thought I had much of a knack for hands-on art...drawing, painting, etc... How wrong I was...I have since learned that I am the go-to mom for inspiration on craft projects. Coolness!
Anyhow, maybe we'll have to reinstate those sessions this winter. It would be a nice breakup in the week, and a chance for some full on social skills work.
Admittedly, I did "re-wrap" one of the goodies in the care package, so I would have something under the Christmas Tree to unwrap!
We also got a lovely package from my mom for St. Nikolaus' Day. Kudos on the presentation, despite, I'm sure, the U.S.P.S.'s best efforts to shake, rattle and roll the contents to smithereens! Finally, I have a flat wire whisk...all the better to cook with! Thanks Mom! And she sent the mister man the coolest craft "my tissue art"...comes with precut colored tissue paper squares and pre-sticky-ed shapes to stick them on to make cute artwork. Fun and (potentially) mess-free! He is so psyched for his friend Nick to come over for arts'n'crafts. Now if only I could get her to the comfort level of computer savviness that is required to read this blog! Hah!
Speaking of...over the summer we had a weekly arts'n'crafts session with friends here...and boy did we churn out some masterpieces. Honestly, I always knew I was creative (musical theatre, much?) but I never really thought I had much of a knack for hands-on art...drawing, painting, etc... How wrong I was...I have since learned that I am the go-to mom for inspiration on craft projects. Coolness!
Anyhow, maybe we'll have to reinstate those sessions this winter. It would be a nice breakup in the week, and a chance for some full on social skills work.
...imps, gremlins, and 'almost 5' year-olds...
This past week has again been difficult. I used to say we had 'a' days and 'b' days. "A" meant it was an autism day, with the mister man's quirks and issues on red alert. And 'b'...that meant better, the days when he could conceivably "pass" for a typical child. How often I have expressed my annoyance that autism doesn't present itself physically...in public it just looks like bad mom/beastly child.
Anyhow, as of late, it's been a series of strictly 'a' days...and bad ones at that. The mister man, while cute and adorable and arguably the love of my life, can also be my worst nightmare. He goes through what I call 'power surges'...these vast time periods where his behaviour is completely without control...and as he gets older he becomes more physically violent and harder to contain. It's as though I have two children, or at the very least, two sides to one. On one hand I have my loveable, cuddleable gentleman of a boy...the one who loves his mami and tries so very hard to control his own autistic tendencies. And then there's the flip side with the emotional outbursts that go on for days and the mass destruction and the hitting-kicking-biting-slapping free for all. And I'll tell you, honestly, sometimes, it is very hard to love the child that is inflicting pain on me.
What makes it so much more frustrating is that he reserves that behaviour solely for me...yeah for trust. Which means no one else ever really grasps that he is capable of so much fury.
Thankfully, as I wrote before, this is all sort of cyclical. For the most part we'll have a stretch of 'b' days with some low-incidence 'a' days sprinkled throughout. And then every once in a while something throws that whole cycle and life becomes...difficult... Such was the case for most of the late spring/summer and now it seems it's starting up again.
I've already dissected every part of the day...diet, sensory profile, sleep pattern, temperature, etc.... And I still can't figure out the cause, which means I can't fix it! I do think allergies plays a part, at least in the summer months. I don't know if maybe the extreme cold and therefore dry air also is affecting him. But I do know that for sure, he processes physical and emotional pains in an extremely wonky way. Almost opposite-world. So if there is some physical issue or discomfort going on, it's completely reasonable that he is processing it emotionally...hence the behaviour.
Ugh!!!!
Anyhow, as of late, it's been a series of strictly 'a' days...and bad ones at that. The mister man, while cute and adorable and arguably the love of my life, can also be my worst nightmare. He goes through what I call 'power surges'...these vast time periods where his behaviour is completely without control...and as he gets older he becomes more physically violent and harder to contain. It's as though I have two children, or at the very least, two sides to one. On one hand I have my loveable, cuddleable gentleman of a boy...the one who loves his mami and tries so very hard to control his own autistic tendencies. And then there's the flip side with the emotional outbursts that go on for days and the mass destruction and the hitting-kicking-biting-slapping free for all. And I'll tell you, honestly, sometimes, it is very hard to love the child that is inflicting pain on me.
What makes it so much more frustrating is that he reserves that behaviour solely for me...yeah for trust. Which means no one else ever really grasps that he is capable of so much fury.
Thankfully, as I wrote before, this is all sort of cyclical. For the most part we'll have a stretch of 'b' days with some low-incidence 'a' days sprinkled throughout. And then every once in a while something throws that whole cycle and life becomes...difficult... Such was the case for most of the late spring/summer and now it seems it's starting up again.
I've already dissected every part of the day...diet, sensory profile, sleep pattern, temperature, etc.... And I still can't figure out the cause, which means I can't fix it! I do think allergies plays a part, at least in the summer months. I don't know if maybe the extreme cold and therefore dry air also is affecting him. But I do know that for sure, he processes physical and emotional pains in an extremely wonky way. Almost opposite-world. So if there is some physical issue or discomfort going on, it's completely reasonable that he is processing it emotionally...hence the behaviour.
Ugh!!!!
29 November, 2007
...i don't want to be in pieces...
"Oh mister man, I love you to pieces!"
"No Mami, I don't want to be in pieces!"
The mister man is a tad bit obsessed with my computer. It's the allure of the keyboard, dont'cha know. After all...the whole alphabet is just sitting there, waiting to be tapped out!
We've been playing a bit with photos of friends and family...making mini-collages and using the arts program to draw elements in. Most people end up with a *splotch* directly over their faces and are thus proclaimed "Transformed!" Thanks to the wonder that is the transformers movie, my child is utterly convinced that we all have the ability to sprout wings, jet packs or multi-round canons.
Several of the gifts he'll be getting from me..ahem, I mean St. Nick...this year, are of the craft variety. I plan on using photos of his beloved friends and family to create some puzzles for him. And I'm also making him a 'Memory' game with pics of the same. And if that means I somehow end up with someone else's more petite nose, I'm all good!
02 November, 2007
another old crosspost...
I don't know who reads this blog regularly...or for that matter who reads it at all...but if there is someone out there reading it, than please know that I am writing this to you.
There is an epidemic in this country that is just beginning to get recognized on a national, newsworthy scale. It's not AIDS, or cancer...it's not ADD/ADHD...it's not a fashionable disease or even recognized at first sight. And yet, at this very moment, 1 in 150 children are diagnosed with it...1 in 94 boys in the United States. And my son is one of them...which means my family is one of the statistics. We are a family on the Autism Spectrum.
Most people only know the term 'autism' in relation to the movie 'Rainman'. Unfortunately, the movie does little to represent the broad spectrum of this disorder...in fact, it's only true representation is that of a high-functioning savant. For the general population of those living with Autism in their families, in their homes, and everyday...Autism Spectrum looks nothing like a hollywood movie.
"My son is here"...the daily reminder I give myself every morning, as a battle cry to deal with the day and the stressors and the very real possibility that I will have watch him slip away again.
When he was born, he was beyond normal...he was ahead of the curve, a developmental wonder. The day he came from the hospital his eyes latched onto a little yellow giraffe that hung on his changing table. At two months he crawled. He loved music and tickling. And he was fun.
Three years ago I sought out a group called 'Help me Grow' in the hopes that they could link me up with resources in the community that were geared towards single mothers. I had separated from my husband abruptly and violently and obtained a restraining order against him. All of a sudden my dream of a nuclear family was obliterated. 'Help me Grow' sent a caseworker to my house with intake forms...a daunting stack of pages to fill out, questionnaires to answer, and records to open. And all of a sudden, he had a speech delay diagnosis.
That quickly. That incomprehensibly. That illogically.
I called this group for help and instead they came and told me my child was flawed.
What a joke! What an impossible thought. He was bilingual. I was raising him to speak English and German. Of course there would be a delay, a minor one, while he figured out which language was appropriate at what time. But please, a speech delay diagnosis? They were off their rockers of course. I mean, seriously, did they mix up the files. Had they seen this vibrant, handsome child?
Within two weeks we were shuffling around from session to session...Occupational Therapy, Speech Therapy, Physical Therapy, Social Immersion Therapy.... And all the while I just kept thinking how silly and frivolous it all was...because my child was perfect.
In the fall of 2005 he was admitted to a special needs preschool. He began in the Early Intervention classroom and spent three mornings a week there in addition to the therapy sessions. Progress was made, and then it wasn't, and then things went backwards, and then progress was made again. Things became cyclical. And suddenly with the final months of school approaching someone said it. Someone said the word and shattered my world. My family, the one in my head and heart, the one that I thought I had and was building with my son...vanished.
I had asked the school psychologist if he would observe my son during school because I wanted to prevent future issues. I knew that his father's emotional history could very well become a concern in his own development. So there I was, all proud of myself for having the forethought and foresight to hope for the best and plan for the worst. And then I was told ' we suspect he may have autism'...just like that, somberly and quietly and lowercase.
autism
Skipping ahead, we've now endured two bouts of testing and diagnoses and we know that we are a family with autism. We're a different family today than we were, or even than we would have been. I am a different mother, a different friend, a different employee. I live my life on the fringe of society, looking in but not being in. My love for my child and my hope for his future dictates my behaviour in every aspect of my life. I love him harder and deeper and more desperately to make up for those who mock him. I hug him tighter and kiss him more often to remind him of his perfection. I shield him from dirty looks and whispered insults and let them fall on me instead. And I try every day to feel his hurting for him so he can be spared that at least.
But every night when I sneak into his room to watch him sleep while I rock gently in the chair by his bed, I know there's more to do and more to give.
So to you, you who are reading this right now...if you know me, if you love me, if your my friend, if you want to be...
Be a friend to me and to my son by seeking out someone in your community who you can help. Call your local MRDD, or Family Services or church. Find a family who lives with autism and ask them what they need. Offer to babysit for an hour so Mom can grocery shop without chaos and criticism. Prepare a meal that fits the dietary and personal needs of a child with autism. Do laundry or cut the grass or vacuum...give the parents the time they need to devote to their child. Or call and leave uplifting messages on their voicemail reminding them that they are heroes in this fight.
Autism is here and it's an epidemic and we need your help. We need your support and love and sympathy.
There is an epidemic in this country that is just beginning to get recognized on a national, newsworthy scale. It's not AIDS, or cancer...it's not ADD/ADHD...it's not a fashionable disease or even recognized at first sight. And yet, at this very moment, 1 in 150 children are diagnosed with it...1 in 94 boys in the United States. And my son is one of them...which means my family is one of the statistics. We are a family on the Autism Spectrum.
Most people only know the term 'autism' in relation to the movie 'Rainman'. Unfortunately, the movie does little to represent the broad spectrum of this disorder...in fact, it's only true representation is that of a high-functioning savant. For the general population of those living with Autism in their families, in their homes, and everyday...Autism Spectrum looks nothing like a hollywood movie.
"My son is here"...the daily reminder I give myself every morning, as a battle cry to deal with the day and the stressors and the very real possibility that I will have watch him slip away again.
When he was born, he was beyond normal...he was ahead of the curve, a developmental wonder. The day he came from the hospital his eyes latched onto a little yellow giraffe that hung on his changing table. At two months he crawled. He loved music and tickling. And he was fun.
Three years ago I sought out a group called 'Help me Grow' in the hopes that they could link me up with resources in the community that were geared towards single mothers. I had separated from my husband abruptly and violently and obtained a restraining order against him. All of a sudden my dream of a nuclear family was obliterated. 'Help me Grow' sent a caseworker to my house with intake forms...a daunting stack of pages to fill out, questionnaires to answer, and records to open. And all of a sudden, he had a speech delay diagnosis.
That quickly. That incomprehensibly. That illogically.
I called this group for help and instead they came and told me my child was flawed.
What a joke! What an impossible thought. He was bilingual. I was raising him to speak English and German. Of course there would be a delay, a minor one, while he figured out which language was appropriate at what time. But please, a speech delay diagnosis? They were off their rockers of course. I mean, seriously, did they mix up the files. Had they seen this vibrant, handsome child?
Within two weeks we were shuffling around from session to session...Occupational Therapy, Speech Therapy, Physical Therapy, Social Immersion Therapy.... And all the while I just kept thinking how silly and frivolous it all was...because my child was perfect.
In the fall of 2005 he was admitted to a special needs preschool. He began in the Early Intervention classroom and spent three mornings a week there in addition to the therapy sessions. Progress was made, and then it wasn't, and then things went backwards, and then progress was made again. Things became cyclical. And suddenly with the final months of school approaching someone said it. Someone said the word and shattered my world. My family, the one in my head and heart, the one that I thought I had and was building with my son...vanished.
I had asked the school psychologist if he would observe my son during school because I wanted to prevent future issues. I knew that his father's emotional history could very well become a concern in his own development. So there I was, all proud of myself for having the forethought and foresight to hope for the best and plan for the worst. And then I was told ' we suspect he may have autism'...just like that, somberly and quietly and lowercase.
autism
Skipping ahead, we've now endured two bouts of testing and diagnoses and we know that we are a family with autism. We're a different family today than we were, or even than we would have been. I am a different mother, a different friend, a different employee. I live my life on the fringe of society, looking in but not being in. My love for my child and my hope for his future dictates my behaviour in every aspect of my life. I love him harder and deeper and more desperately to make up for those who mock him. I hug him tighter and kiss him more often to remind him of his perfection. I shield him from dirty looks and whispered insults and let them fall on me instead. And I try every day to feel his hurting for him so he can be spared that at least.
But every night when I sneak into his room to watch him sleep while I rock gently in the chair by his bed, I know there's more to do and more to give.
So to you, you who are reading this right now...if you know me, if you love me, if your my friend, if you want to be...
Be a friend to me and to my son by seeking out someone in your community who you can help. Call your local MRDD, or Family Services or church. Find a family who lives with autism and ask them what they need. Offer to babysit for an hour so Mom can grocery shop without chaos and criticism. Prepare a meal that fits the dietary and personal needs of a child with autism. Do laundry or cut the grass or vacuum...give the parents the time they need to devote to their child. Or call and leave uplifting messages on their voicemail reminding them that they are heroes in this fight.
Autism is here and it's an epidemic and we need your help. We need your support and love and sympathy.
an old crosspost...
There are days, few and far between, but there nonetheless when I feel as though I can't handle all this on my own. It's hard enough being a single parent, but then you add in a special needs child and throw into the mix that there is no extended family close by to help out. And what comes out....frazzled frustrated me! Ugh!
For the most part we've gotten things down to a system and we manage to get through the day to day without too much difficulty. At this point I feel as though I've adjusted fairly well to his needs and emotions and there's almost a sense of intuition or predictability to it. I can judge a room before we enter and know what will set him off: whether it's the crowd, the lighting, the smell, the feel of the floor...
And then there are 'THOSE DAYS'....the ones where I have 1 in 100 odds of preventing imminent disaster. I still don't know what set him off today. But my jaw bears testament to his inner turmoil with a fresh bruise. Foot on jaw with force = very bad thing!
My own frustration really lies in the fact that there is sometimes very little I can do help him because the sensory integration disorder that is part of his autism won't allow him to accept comfort when he is in meltdown mode. Tactile defensiveness can manifest as a pain reaction to a hug or a gentle caress and something as a soft as a whisper can bombard his ears like a siren. It is those times when I feel adrift and helpless and useless even. It is those times when I wonder if there is any 'getting better'. And then there's the guilt in my heart that says 'if you can't accept that he is perfect as is, how can you possibly expect others to do so?". In the maelstrom of stymming or meltdowns it can be so easy to forget the sense of wonder and perfection that he brings to my life.
What interests me most on a daily basis is all the autism research that seeks a cure or a solution. So far, there isn't any one fix. There's therapies, essentially limitless....ABA, Occupational, Speech, Physical, Fine Motor, Gross Motor, Social Skills, etc... But what I wonder in my heart of hearts is why am I sometimes so desperate for a cure? Why do I feel my son needs to be 'fixed'? Is it simply because society has imprinted on me it's rules of what is acceptable and what is not and I am imposing them on my child? The thing is, I know that compared to your average mainstream child, my son is different. But what I don't know, what I don't necessarily believe, is that his autism is a bad thing.
He sees the world in ways I can't even imagine. His senses take in things I don't even notice. And his mind works around puzzles and mysteries until he finds a suitable answer, whereas I would just accept the standard opinion. The changes he has wrought in me and my use of my talents and God-given creativity would probably never have occurred were he not autistic.
So does he need to be fixed or programmed or therapied until he fits into society, or does society at large need to once and for all realize that true beauty lies in each person's difference....
For the most part we've gotten things down to a system and we manage to get through the day to day without too much difficulty. At this point I feel as though I've adjusted fairly well to his needs and emotions and there's almost a sense of intuition or predictability to it. I can judge a room before we enter and know what will set him off: whether it's the crowd, the lighting, the smell, the feel of the floor...
And then there are 'THOSE DAYS'....the ones where I have 1 in 100 odds of preventing imminent disaster. I still don't know what set him off today. But my jaw bears testament to his inner turmoil with a fresh bruise. Foot on jaw with force = very bad thing!
My own frustration really lies in the fact that there is sometimes very little I can do help him because the sensory integration disorder that is part of his autism won't allow him to accept comfort when he is in meltdown mode. Tactile defensiveness can manifest as a pain reaction to a hug or a gentle caress and something as a soft as a whisper can bombard his ears like a siren. It is those times when I feel adrift and helpless and useless even. It is those times when I wonder if there is any 'getting better'. And then there's the guilt in my heart that says 'if you can't accept that he is perfect as is, how can you possibly expect others to do so?". In the maelstrom of stymming or meltdowns it can be so easy to forget the sense of wonder and perfection that he brings to my life.
What interests me most on a daily basis is all the autism research that seeks a cure or a solution. So far, there isn't any one fix. There's therapies, essentially limitless....ABA, Occupational, Speech, Physical, Fine Motor, Gross Motor, Social Skills, etc... But what I wonder in my heart of hearts is why am I sometimes so desperate for a cure? Why do I feel my son needs to be 'fixed'? Is it simply because society has imprinted on me it's rules of what is acceptable and what is not and I am imposing them on my child? The thing is, I know that compared to your average mainstream child, my son is different. But what I don't know, what I don't necessarily believe, is that his autism is a bad thing.
He sees the world in ways I can't even imagine. His senses take in things I don't even notice. And his mind works around puzzles and mysteries until he finds a suitable answer, whereas I would just accept the standard opinion. The changes he has wrought in me and my use of my talents and God-given creativity would probably never have occurred were he not autistic.
So does he need to be fixed or programmed or therapied until he fits into society, or does society at large need to once and for all realize that true beauty lies in each person's difference....
28 October, 2007
...sums and mores...
Ah Sunday...this past week is FINALLY dead and buried.
Having spent a good part of it sick and hurting, I'm more than ready to move on and enjoy some health and well being, not to mention wealth (as if!).
With the school year well underway, the round-up of weekly meetings is also in full effect. I'm thrilled to report that the mister man's IEP meeting this Wednesday was a raging success despite my having a 102 degree temp and an even more raging headache. Seems the genius child is wowing people left and right...and has met more than 50% of the goals we set for him last year! Rock on! His teacher was most impressed with all the hard work we did this summer and spoke glowingly of all his advances and new skills. And since it's his second year in this classroom, he's so the big kid on the block...senioritis anyone??? :) Seriously though, he's doing phenomenally well and is really skill building.
Related and yet not, I recently noticed that of all the kids my son plays with...he is by far the best behaved. Crazy, huh? He's the only autistic one in his circle of friends....which would usually equal major behavioural issues. And instead, in public, he's the one with the least. We've worked so hard on how to behave appropriately in society....it's awesome to know that it has paid off so well. He's a gentleman in the company of thugs! His little playmates run roughshod all over the place...and here he is saying please and thank you, cleaning up after himself and being a helper. Awwwww.... So I'm taking a moment to pat myself on the back and congratulate myself on raising a child with strong FAMILY VALUES in a SINGLE PARENT FAMILY!!!! Hahaha....
Speaking of family....the in-laws side was here yesterday for the semi-annual visit. We do get along much better now, so (insert some long, drawn out, mature sounding bit of garble). But...I still know full well that there is a need to protect both the mister man and myself and it's sometimes quite awkward. I ended up 'giving in' on one thing that I wish now I hadn't...but it's to late now. And just for the record, I don't like this 'day-after' emotional stir-up that comes from them talking about my ex!!!
There was also a more than healthy dose of attemptive-guilt-tripping done over our intention to move out of Ohio. For real??? Are you freakin' serious? What, we're gonna stay here in culture-hell because you show up twice a year to spoil my kid with material things? Or because my mother-in-law will miss us even though we see her a marginally better 4 or 5 times a year? She wasn't even the one complaining! In fact, she has more than once told me that she supports our need to get a fresh start in a place that suits us better.
End rant!
Ok, truth be told I do feel a twinge of the badness for ranting about them at all. It's not their fault we any of us are in this situation...that blame lies squarely on ex's shoulders. But I just don't like the way they've chosen to deal with it. At some point in life you just have to take a moral standing and figure out what issues you support and which you don't. And if someone has abandoned his child, don't take his side in front of that child's mother. Or make it your personal crusade to do his dirty work for him.
Must. Stop. Now. Else I'll get grouchy all over again!
Having spent a good part of it sick and hurting, I'm more than ready to move on and enjoy some health and well being, not to mention wealth (as if!).
With the school year well underway, the round-up of weekly meetings is also in full effect. I'm thrilled to report that the mister man's IEP meeting this Wednesday was a raging success despite my having a 102 degree temp and an even more raging headache. Seems the genius child is wowing people left and right...and has met more than 50% of the goals we set for him last year! Rock on! His teacher was most impressed with all the hard work we did this summer and spoke glowingly of all his advances and new skills. And since it's his second year in this classroom, he's so the big kid on the block...senioritis anyone??? :) Seriously though, he's doing phenomenally well and is really skill building.
Related and yet not, I recently noticed that of all the kids my son plays with...he is by far the best behaved. Crazy, huh? He's the only autistic one in his circle of friends....which would usually equal major behavioural issues. And instead, in public, he's the one with the least. We've worked so hard on how to behave appropriately in society....it's awesome to know that it has paid off so well. He's a gentleman in the company of thugs! His little playmates run roughshod all over the place...and here he is saying please and thank you, cleaning up after himself and being a helper. Awwwww.... So I'm taking a moment to pat myself on the back and congratulate myself on raising a child with strong FAMILY VALUES in a SINGLE PARENT FAMILY!!!! Hahaha....
Speaking of family....the in-laws side was here yesterday for the semi-annual visit. We do get along much better now, so (insert some long, drawn out, mature sounding bit of garble). But...I still know full well that there is a need to protect both the mister man and myself and it's sometimes quite awkward. I ended up 'giving in' on one thing that I wish now I hadn't...but it's to late now. And just for the record, I don't like this 'day-after' emotional stir-up that comes from them talking about my ex!!!
There was also a more than healthy dose of attemptive-guilt-tripping done over our intention to move out of Ohio. For real??? Are you freakin' serious? What, we're gonna stay here in culture-hell because you show up twice a year to spoil my kid with material things? Or because my mother-in-law will miss us even though we see her a marginally better 4 or 5 times a year? She wasn't even the one complaining! In fact, she has more than once told me that she supports our need to get a fresh start in a place that suits us better.
End rant!
Ok, truth be told I do feel a twinge of the badness for ranting about them at all. It's not their fault we any of us are in this situation...that blame lies squarely on ex's shoulders. But I just don't like the way they've chosen to deal with it. At some point in life you just have to take a moral standing and figure out what issues you support and which you don't. And if someone has abandoned his child, don't take his side in front of that child's mother. Or make it your personal crusade to do his dirty work for him.
Must. Stop. Now. Else I'll get grouchy all over again!
18 October, 2007
...duality: time (lapse) in judgement...
Blog Slack: as defined by myself- the inadvertant action of leaving off from the blog for several days or a week...no malice or boredom aforethought.
Having now ignored the call of the blog for a week or so, I return to the typing. *insert happy dance* There have been some developements, both interesting and non in my life lately....and this past week has proven to be just as rife with drama as every one prior. Do imagine if you will, being phone-stalked by not just one, but two (yes count them...TWO) unwanted suitors who aquired your phone number without your consent. And now, tweak that imagination of yours up a notch or so and add in to the mix one nasal timbre and apparent predilection for the young and exotic on one hand, and an attemptive two-timer on the other and you should have a good idea of what my poor answering machine has been dealing with. Poor thing...I really ought to unplug her for a day or so and let her recover!
The real rub in all of this is that my number was given out despite my having said 'no deal'. Grrrrr!
Anyhow and anyway...what's done is done...and it's not as though I oughtn't to be used to this sort of thing by now...
For those who didn't get the memo (you know, that grain of common sense) it is not now, nor has it ever been, nor will it ever be any possible form of 'ok' to give out my personal information to anyone. Thanks a bunch!
Having now ignored the call of the blog for a week or so, I return to the typing. *insert happy dance* There have been some developements, both interesting and non in my life lately....and this past week has proven to be just as rife with drama as every one prior. Do imagine if you will, being phone-stalked by not just one, but two (yes count them...TWO) unwanted suitors who aquired your phone number without your consent. And now, tweak that imagination of yours up a notch or so and add in to the mix one nasal timbre and apparent predilection for the young and exotic on one hand, and an attemptive two-timer on the other and you should have a good idea of what my poor answering machine has been dealing with. Poor thing...I really ought to unplug her for a day or so and let her recover!
The real rub in all of this is that my number was given out despite my having said 'no deal'. Grrrrr!
Anyhow and anyway...what's done is done...and it's not as though I oughtn't to be used to this sort of thing by now...
For those who didn't get the memo (you know, that grain of common sense) it is not now, nor has it ever been, nor will it ever be any possible form of 'ok' to give out my personal information to anyone. Thanks a bunch!
03 October, 2007
...happy october...
Yay! Fall is officially begun! And yes, I know fall 'began' already...but at least in my book it doesn't really start until October. Welcome to cool weather, crisp breezes and the crunch of golden leaves underfoot.
I really truly genuinely like the month of October. Something in the air has me a little bit giddy...dreaming of apple cider, mulled wine, and cozy blankets. And of course there's the fact that the summer heat has FINALLY let up...so long walks in the early evening are actually enjoyable.
I'm looking forward to helping the mister man carve a pumpkin (and by help I do mean doing it for him!) and make a fall wreath with autumn leaves. It's high time that we stop drawing flowers and bugs and move on to pumpkins and turkeys!
He's headed to the pumpkin patch tomorrow with his class. And I'm hoping against hope that this year he brings home a great big giant pumpkin. Last year he chose a rather wimpy one with a dent in one side and a wobble in the base. :( That poor sucker ended up as pumpkin boogers on our front stoop one night. Gotta love living in the ghetto, right?!?
I'm off to sort through recipes for the quintessential (sp?)fall recipe...whatever that may be...and start a whole new seasons worth of crocheting.
I really truly genuinely like the month of October. Something in the air has me a little bit giddy...dreaming of apple cider, mulled wine, and cozy blankets. And of course there's the fact that the summer heat has FINALLY let up...so long walks in the early evening are actually enjoyable.
I'm looking forward to helping the mister man carve a pumpkin (and by help I do mean doing it for him!) and make a fall wreath with autumn leaves. It's high time that we stop drawing flowers and bugs and move on to pumpkins and turkeys!
He's headed to the pumpkin patch tomorrow with his class. And I'm hoping against hope that this year he brings home a great big giant pumpkin. Last year he chose a rather wimpy one with a dent in one side and a wobble in the base. :( That poor sucker ended up as pumpkin boogers on our front stoop one night. Gotta love living in the ghetto, right?!?
I'm off to sort through recipes for the quintessential (sp?)fall recipe...whatever that may be...and start a whole new seasons worth of crocheting.
26 September, 2007
...sense and sensibility...
The backstory: Last year I met Stacy at the school the mister man attends. We bonded nearly immediately and became fast friends...hopefully for life. She has two boys...one close in age to the mister man, and one 2 years old. Two year old M. has Down's Syndrome, and four year old N. has a speech delay. N. gets VERY upset if his clothing gets wet...as little as a single drop of water on his shirt triggers tantrums, crying and general discord. In addition, he has a few other sensory issues...mostly related to touch...though noise seems to bother him occasionally also. At any rate, I had suggested to Stacy that she fill out a sensory profile on him through the school's resources, and she called today to tell me that the results were normal. Frankly, I was suprised. I had rather expected that they would have found he had some form of Sensory Intergration Processing Dysfunction, or something similiar. I went ahead and suggested that Stacy do some research on her own, just to see if any of the techniques recommended for SIPD might help N. It was only after I hung up that I realized how telling that was of what kind of a parent I am.
Here's the thing...I understand that doctors go to school for a long time, learn a lot of info, memorize a lot of techniques and are generally supposed to be far smarter than I. But at the end of the day I hold firmly to the position that I know both myself and my child far better than any doctor. It's not necessarily that I disregard doctor's orders or advice...I just believe in research. To many times in my life I have gotten the 'one size fits all' diagnosis or cure...and found it lacking. The fact that I know more about autism than the pediatrician is somewhat appalling. The fact that I have, on occasion, been prescribed the same dosage painkiller as a healthy adult male is somewhat appalling.
Maybe it's the fact that my son is on the spectrum that has made me more of a 'think outside the box' parent...or maybe I was just made that way to start with. Either way, I believe that if I am observing a certain behaviour or symptom than I need to look into what can be done about it. I guess my whole point is, I believe that one should follow intuition...even if it goes against what the professional says.
To quote Jenny McCarthy, "my son is my science". I'm not all about curing autism or preventing it or even changing my son. What I am about is making sure that he has the right tools at his disposal to be as happy and functional as he wants to be. And that means trying what I think might work, even if the doctor or therapist or teacher disagrees.
Here's the thing...I understand that doctors go to school for a long time, learn a lot of info, memorize a lot of techniques and are generally supposed to be far smarter than I. But at the end of the day I hold firmly to the position that I know both myself and my child far better than any doctor. It's not necessarily that I disregard doctor's orders or advice...I just believe in research. To many times in my life I have gotten the 'one size fits all' diagnosis or cure...and found it lacking. The fact that I know more about autism than the pediatrician is somewhat appalling. The fact that I have, on occasion, been prescribed the same dosage painkiller as a healthy adult male is somewhat appalling.
Maybe it's the fact that my son is on the spectrum that has made me more of a 'think outside the box' parent...or maybe I was just made that way to start with. Either way, I believe that if I am observing a certain behaviour or symptom than I need to look into what can be done about it. I guess my whole point is, I believe that one should follow intuition...even if it goes against what the professional says.
To quote Jenny McCarthy, "my son is my science". I'm not all about curing autism or preventing it or even changing my son. What I am about is making sure that he has the right tools at his disposal to be as happy and functional as he wants to be. And that means trying what I think might work, even if the doctor or therapist or teacher disagrees.
25 September, 2007
...shallow thoughts from a deep mind (or the reverse)... (crosspost)
September is drawing to a close, and after a brief spat with cool weather, we've warmed up again, and my tank tops and I both wish the warmth would last till November. I miss those mild autumns of my childhood, when come Halloween one did not have to wear turtlenecks and long underwear under costumes. Of course someone somewhere is laughing loudly...as it's more than common knowledge that I sport the jeans/tank-top combo all year long!
The mister man will be representing the Batman this Halloween...and has already begun getting into character. At least twice a day we enter stages where I am only allowed to refer to him as Bruce Wayne. I've known now for a while that his obsession had moved from Spiderman to Batman, and it was luck indeed that found me a thrift store goldmine in a $0.90 costume that includes both cape and mask/hat/bat-ears. Rock on! Now all I need for him is black slacks and turtleneck and he'll be good to go. I, on the other hand, am still spinning my wheels in regards to my own costume.
I've rearranged my entire home (or so it seems) and the upshot is that for the first time in years I am actually getting real sleep! Yay me! Could this mean those dark circles under my eyes are a thing of the past? *cross those fingers* Additionally, the mister man now has a defined room for play/therapy and I have a defined place to put him when quiet-time NEEDS to happen.
I find it funny in a sad way that nearly every blog/group/organization online that is Autism related devotes 99% of its energy to 'in-house' fighting. So much for support and community. I liked how Jenny McCarthy said 'my son is my science' or some such sentence. That's just how I feel.
I love the very beginning of each season...as it inspires me to get cooking. It's really the only time I get down to using all those seasonal recipes that I fanatically cut and paste. Fall has me dreaming of apples and squashes and soups. But I know before long I'll be back to my old standards.
Having never had cable, I don't really know what I'm missing...but can it be any worse than 'The Bachelor'. Hurling wads of crumpled-up paper at the tv does not ,in fact, cause the contestants to check their desperation at the door. Do other people change the channel out of embarassment or am I the only one?
Speaking of TV, why do I turn it on for background ambience? At the end of the day when the mister man is finally off in dreamland, I usually settle down on the sofa with a good book and a warm cup....and turn on the tv. Maybe it's the flicker? Or the garbled voices when the volume is a step away from muted?
The mister man will be representing the Batman this Halloween...and has already begun getting into character. At least twice a day we enter stages where I am only allowed to refer to him as Bruce Wayne. I've known now for a while that his obsession had moved from Spiderman to Batman, and it was luck indeed that found me a thrift store goldmine in a $0.90 costume that includes both cape and mask/hat/bat-ears. Rock on! Now all I need for him is black slacks and turtleneck and he'll be good to go. I, on the other hand, am still spinning my wheels in regards to my own costume.
I've rearranged my entire home (or so it seems) and the upshot is that for the first time in years I am actually getting real sleep! Yay me! Could this mean those dark circles under my eyes are a thing of the past? *cross those fingers* Additionally, the mister man now has a defined room for play/therapy and I have a defined place to put him when quiet-time NEEDS to happen.
I find it funny in a sad way that nearly every blog/group/organization online that is Autism related devotes 99% of its energy to 'in-house' fighting. So much for support and community. I liked how Jenny McCarthy said 'my son is my science' or some such sentence. That's just how I feel.
I love the very beginning of each season...as it inspires me to get cooking. It's really the only time I get down to using all those seasonal recipes that I fanatically cut and paste. Fall has me dreaming of apples and squashes and soups. But I know before long I'll be back to my old standards.
Having never had cable, I don't really know what I'm missing...but can it be any worse than 'The Bachelor'. Hurling wads of crumpled-up paper at the tv does not ,in fact, cause the contestants to check their desperation at the door. Do other people change the channel out of embarassment or am I the only one?
Speaking of TV, why do I turn it on for background ambience? At the end of the day when the mister man is finally off in dreamland, I usually settle down on the sofa with a good book and a warm cup....and turn on the tv. Maybe it's the flicker? Or the garbled voices when the volume is a step away from muted?
...what'll it be...
For most everyone reading this, the following applies: you are either family, friend or curious deviant stranger. If you fall in the top two categories than chances are you are wondering: 1)what happened to the old blog? 2)why create a new one and 3)how many more times am I going to change my mind?
Wait, were you expecting an answer to any of those?
The old blog is in the process of being done away with. Currently the gremlins in the basement (yes, some of them still hide out in the nooks and crannies) are hacking it to bits. This new one will be solely mine. Yes of course, you can still expect that pictures of the mister man will pop up occasionally...but this is more my forum to keep in touch, journal, and wade through all the drivel currently occupying my 'upper stories'. Perhaps at some point in the future, we'll create and link to a blog for the mister man....but as of yet his typing skills consist of this (af$^(*&FDSG7) which even I have trouble interpreting.
So with that written, enter at your own risk, reply at greater risk, and don't dare argue unless you know I'm well caffeinated...
Wait, were you expecting an answer to any of those?
The old blog is in the process of being done away with. Currently the gremlins in the basement (yes, some of them still hide out in the nooks and crannies) are hacking it to bits. This new one will be solely mine. Yes of course, you can still expect that pictures of the mister man will pop up occasionally...but this is more my forum to keep in touch, journal, and wade through all the drivel currently occupying my 'upper stories'. Perhaps at some point in the future, we'll create and link to a blog for the mister man....but as of yet his typing skills consist of this (af$^(*&FDSG7) which even I have trouble interpreting.
So with that written, enter at your own risk, reply at greater risk, and don't dare argue unless you know I'm well caffeinated...
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