By now, reader, I'm sure you are more than well aware that April is Autism Awareness Month. After all, I've been mentioning it left and right, haven't I?
I'll be honest...I'm going to keep bringing it up. Yup, I am. Over and over again. And you know what? When April ends and Autism Awareness Month draws to a close, I'm still going to be mentioning it.
Because in my home, in my family, in my life, it doesn't end.
It just is.
and it's my blog! :)
Mister Man is autistic. He's plenty of other things as well...many of them fantastic and wonderful, some of them less so. But whether or not he's in creative mode, playful mode, tantrum mode, etc... - he's always without fail autistic.
It's not like an article of clothing he can put on or take off as he pleases.
It's not like a choice he can wake up making.
It's not even like a mood he can be coaxed out of.
It just is.
And it colours everyday of our life a different shade than it otherwise would have been.
Our mornings look different than yours. Our phone calls sound different than yours. Our meals taste different.
Now, I have countless times talked about how having a special needs child has brought out the best in me...it's made me into someone I never would have guessed I could be.
But gosh darn it, it's hard. Really hard. To wake up day after day and steel yourself for the challenges that you know will come at every turn. To be always prepped for every possible outcome in every situation. To feel like leaving the house requires a checklist...even just to go on a walk.
And it's exhausting...switching hats seamlessly from loving mother to demanding therapist to challenging teacher...even playing doctor and experimental scientist.
Making sure I'm always hyper aware of what's going on around us...noises, colours, lights, movement, scents...it's all important.
Like any parent of a special needs child, my strongest wish is for understanding.
Do you see us walking down the street...my firm grasp and constant directives...his stimmy-fingers and apparent oblivion? Understand that we're enjoying ourselves. Do you see us at the local Target as I clutch him hard against my chest while his whole body flails and tears pour down his face. Understand that this is a meltdown of sensory over stimulation. Do you see us at the playground, in the cafe, in church? Do you wonder at that child and his mother? Do you think he's bratty or spoiled or disobedient or scary? Understand that we want your friendship. Understand that we are trying to be in the world. Understand that we have great things to offer. Understand that we do things differently. Understand autism.
And then...move on. Come say hi! We'll be glad to meet you...
17 April, 2010
15 April, 2010
...spring cleaning...
Over the last week or so my home has been undergoing renovations. No, not the large scale construction projects or one-room-at-a-time remodels. Ours has been much smaller and yet, at least in my eyes, just as major of a change. I even posted about it on Facebook! Now if that's not major... :)
So what's the change you ask?
Why, dishes, of course.
Dishes?!?
Yup, dishes.
Part of this single mom journey I'm on has meant holding on to things I might otherwise have wanted to get rid of, out of pure necessity. Things that emphasized the broken part of what has made my family. Things that held significant memories of a toxic marriage. Things that someone else had chosen. One of the good changes that came out of our move two years ago was the letting loose of some of those things. We had a huge garage sale. We listed things on Craiglist and on Freecycle. We found new happy homes for useful belongings. We filled the dumpster...several times over. And in the end I locked the door and walked to the U-Haul full of things we still needed.
So every morning for years now I've made my coffee and poured it into a blue mug...added water to instant oatmeal in a blue rimmed bowl...and shared dinner with my son on a blue plate.
Mind you, I like blue. I like blue a lot. I even joke that when people ask me what my favourite colour is I always say purple, but I should say blue...because that's what I generally buy.
But these blues...these tangible unyielding surfaces of blue...they belonged to a past I've struggled to grow out of. They were a symbol, of course, of a marriage that failed and that hurt me deeply. But more than that, they were objects that held memories...of a 'he and I' and how he chose them for 'us'. Even here in a new place all these years later I could go to take a sip and have a clear memory of him lifting the very same mug to his mouth. I could remember setting the table for dinner and how I hoped he'd like what I had prepared. And that little moment so easily could overpower me with images of how bad it became...the fear, the anger, the sorrow...
And yet, here in this new place I had made room in the cupboard for those dishes. I continued to reach for them in the morning...making my son's breakfast on a plate that the father he doesn't know chose. And finally, I just had it. The dishes had to go.
And GO they did...first onto the floor to smash into smithereens, then into the kitchen garbage...and soon thereafter to a dumpster. Gone. Just gone.
I can't explain how or why that little rebellion of disposal just freed something in me. But it sure did.
Of course, now I had thrown out the dishes. The DISHES!
Which meant...I needed to go buy dishes! Within a few days I had gone here there and everywhere in pursuit of new dishes. We ate a lot of takeout during those days! I finally settled on Bed Bath and Beyond and Mister Man assisted in the choosing. After all, these are the dishes that we are choosing for our family.
That night after Mister Man was tucked safely into bed with his own mis-matched pajama choice and his stuffies round about him, I went to work. I cleaned out the cupboard and scrubbed it bare. Carefully I lined up the new dishes and bowls and mugs and glasses. And then I stepped back. I'm fairly certain a sigh of contentment came next. There, in front of me, was a fresh start. A highly symbolic one, but oh so important.
The following morning I poured my coffee into an oversized mug...quite well suited to my caffeine addiction. I made my son's breakfast and plated it on a dish...with raised edges that help prevent some of his spills. I poured juice into a glass...with a heavy bottom that's hard to tip over. And I admired our choices as the Mister Man munched, crunched, slurped and gurgled before school.
I know it's crazy to put so much into a few simple dishes. But to me, just this once, the object was important. It's one step at a time, as it's always been. One change or lack thereof. One discard or one acquisition. But gradually, with the help of one opinionated little boy, I'm making a new life for us full of things and people and choices that are well thought out...
Curious? In the end we went with white...clean, pure white...in all kinds of funky, structural and free form patterns and pieces. We opted to mix and match among the pieces he liked and I liked. And I LOVE that we can keep adding in new things whenever necessity calls. After all, this life of ours is constantly changing...who knows what we'll need further down the line.
Besides...everything goes with white!
So what's the change you ask?
Why, dishes, of course.
Dishes?!?
Yup, dishes.
Part of this single mom journey I'm on has meant holding on to things I might otherwise have wanted to get rid of, out of pure necessity. Things that emphasized the broken part of what has made my family. Things that held significant memories of a toxic marriage. Things that someone else had chosen. One of the good changes that came out of our move two years ago was the letting loose of some of those things. We had a huge garage sale. We listed things on Craiglist and on Freecycle. We found new happy homes for useful belongings. We filled the dumpster...several times over. And in the end I locked the door and walked to the U-Haul full of things we still needed.
So every morning for years now I've made my coffee and poured it into a blue mug...added water to instant oatmeal in a blue rimmed bowl...and shared dinner with my son on a blue plate.
Mind you, I like blue. I like blue a lot. I even joke that when people ask me what my favourite colour is I always say purple, but I should say blue...because that's what I generally buy.
But these blues...these tangible unyielding surfaces of blue...they belonged to a past I've struggled to grow out of. They were a symbol, of course, of a marriage that failed and that hurt me deeply. But more than that, they were objects that held memories...of a 'he and I' and how he chose them for 'us'. Even here in a new place all these years later I could go to take a sip and have a clear memory of him lifting the very same mug to his mouth. I could remember setting the table for dinner and how I hoped he'd like what I had prepared. And that little moment so easily could overpower me with images of how bad it became...the fear, the anger, the sorrow...
And yet, here in this new place I had made room in the cupboard for those dishes. I continued to reach for them in the morning...making my son's breakfast on a plate that the father he doesn't know chose. And finally, I just had it. The dishes had to go.
And GO they did...first onto the floor to smash into smithereens, then into the kitchen garbage...and soon thereafter to a dumpster. Gone. Just gone.
I can't explain how or why that little rebellion of disposal just freed something in me. But it sure did.
Of course, now I had thrown out the dishes. The DISHES!
Which meant...I needed to go buy dishes! Within a few days I had gone here there and everywhere in pursuit of new dishes. We ate a lot of takeout during those days! I finally settled on Bed Bath and Beyond and Mister Man assisted in the choosing. After all, these are the dishes that we are choosing for our family.
That night after Mister Man was tucked safely into bed with his own mis-matched pajama choice and his stuffies round about him, I went to work. I cleaned out the cupboard and scrubbed it bare. Carefully I lined up the new dishes and bowls and mugs and glasses. And then I stepped back. I'm fairly certain a sigh of contentment came next. There, in front of me, was a fresh start. A highly symbolic one, but oh so important.
The following morning I poured my coffee into an oversized mug...quite well suited to my caffeine addiction. I made my son's breakfast and plated it on a dish...with raised edges that help prevent some of his spills. I poured juice into a glass...with a heavy bottom that's hard to tip over. And I admired our choices as the Mister Man munched, crunched, slurped and gurgled before school.
I know it's crazy to put so much into a few simple dishes. But to me, just this once, the object was important. It's one step at a time, as it's always been. One change or lack thereof. One discard or one acquisition. But gradually, with the help of one opinionated little boy, I'm making a new life for us full of things and people and choices that are well thought out...
Curious? In the end we went with white...clean, pure white...in all kinds of funky, structural and free form patterns and pieces. We opted to mix and match among the pieces he liked and I liked. And I LOVE that we can keep adding in new things whenever necessity calls. After all, this life of ours is constantly changing...who knows what we'll need further down the line.
Besides...everything goes with white!
07 April, 2010
...take a memory...
In what feels like a long distant past, Mister Man and I were walking back home from the park near our Ohio home. Every few moments he would stop dead still, drop to his knees and stare intently at the ground. "Mami, Mami...look, look, look!" And so I did. I too dropped to my knees and stared as the minuscule march of ants wound in and out of sidewalk canyons and over twig mountains. I stared as the petals of a small purple floweret trembled in the gush of wind from Mister Man's breath. I stared at the marbled pebble reflecting millions of rainbows onto the asphalt.
And so we made our slow way home, stopping and kneeling and admiring Nature's handiwork wherever we found it.
The following day we headed to the door to start out on another walk. As I put key to lock, Mister Man started and exclaimed "Mami, bring the camera." So off we went, I holding the camera in one hand and a small sweaty boy-hand in the other.
No sooner had we strolled out of the complex then Mister Man tugged hard on my hand and dropped to the now familiar observer's stance. I bent over to look at the gushing river of water making it's way down a crack in the concrete piling. Mister Man's whole body was tense with concentration, his eyes brilliant and wide as he focused so keenly on this little, minor, insignificant moment. He reached up blindly for my hand, dragging me down closer to his marvel and whispered so as not to disturb Nature herself "Mami, take a memory...make a picture for me."
Nowadays, others laugh at my photo fixations. They roll their eyes when I grab my camera and start clicking. I don't pretend to have talent or skill. I just want to take a memory...
And so we made our slow way home, stopping and kneeling and admiring Nature's handiwork wherever we found it.
The following day we headed to the door to start out on another walk. As I put key to lock, Mister Man started and exclaimed "Mami, bring the camera." So off we went, I holding the camera in one hand and a small sweaty boy-hand in the other.
No sooner had we strolled out of the complex then Mister Man tugged hard on my hand and dropped to the now familiar observer's stance. I bent over to look at the gushing river of water making it's way down a crack in the concrete piling. Mister Man's whole body was tense with concentration, his eyes brilliant and wide as he focused so keenly on this little, minor, insignificant moment. He reached up blindly for my hand, dragging me down closer to his marvel and whispered so as not to disturb Nature herself "Mami, take a memory...make a picture for me."
Nowadays, others laugh at my photo fixations. They roll their eyes when I grab my camera and start clicking. I don't pretend to have talent or skill. I just want to take a memory...
02 April, 2010
Autism Awareness Month: an old crosspost
I'm resurrecting an old post...way back from my days on LiveJournal...on this second day of Autism Awareness Month.
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 stimming 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....
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 stimming 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....
01 April, 2010
Autism Awareness Month Kicks Off
How much do I love that the official start of Autism Awareness Month shares a date with April Fool's?
Particularly since, in raising my own spectrum son, I'm daily challenged in explaining all that is not literal. Part of the challenge in communication with individuals on the autism spectrum is the tendency to not conceive of emotional language or read facial communication appropriately.
Of course, throw into the mix my own 'extreme sarcasm levels' and this little boy of mine is officially in the school of hard knocks when it comes to effective incoming and outgoing communications.
The interesting realization though is that my primary mode of outgoing communication tends to the melodramatic in both tone and facial expression. (Blame it on the Musical Theatre major in me.) I tend to think that because my son daily gets my emotional communication in full effect he's more able than most spectrum kids to read those expressions and intonations in others.
Maybe I'm right, maybe I'm wrong...but gosh darn it, I'm patting myself on the back all the same!
At any rate, for this month, expect a lot of Autism Awareness focused blogging. Show your support for our little family with comments directed at the Mister Man himself. And feel free to ask me any questions about Autism and our journey through it all. Worry not...I have no shame! :)
Particularly since, in raising my own spectrum son, I'm daily challenged in explaining all that is not literal. Part of the challenge in communication with individuals on the autism spectrum is the tendency to not conceive of emotional language or read facial communication appropriately.
Of course, throw into the mix my own 'extreme sarcasm levels' and this little boy of mine is officially in the school of hard knocks when it comes to effective incoming and outgoing communications.
The interesting realization though is that my primary mode of outgoing communication tends to the melodramatic in both tone and facial expression. (Blame it on the Musical Theatre major in me.) I tend to think that because my son daily gets my emotional communication in full effect he's more able than most spectrum kids to read those expressions and intonations in others.
Maybe I'm right, maybe I'm wrong...but gosh darn it, I'm patting myself on the back all the same!
At any rate, for this month, expect a lot of Autism Awareness focused blogging. Show your support for our little family with comments directed at the Mister Man himself. And feel free to ask me any questions about Autism and our journey through it all. Worry not...I have no shame! :)
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