I started following a few blogs, twitter and facebok pages recently as April was Autism awareness month. For the most part I found a great deal of supportive and real life "Aha" experiences. However, I also found a great deal of those that posted how they wouldn't change their children or family member's one iota. This got me thinking, in fact it got me soul searching.
Of course I know and accept my children (Jacob-12, ASD, BP, ADHD, etc etc; Cormac-8, Aspergers, SPD, etc etc; Hannah-5, Adhd, SPD) are perfect as they are as that is the way they are made....hard wired so to speak. I was left thinking. My two boys really, I mean REALLY struggle with peer interactions. Neither have "friends" outside of school relationships and even then it's heavily patrolled and orchestrated by a wonderful school.
However, the pressure is on by the Autie world at large to accept them to the point that I push away all else. I'm not sure I can, in fact I know I can't. Of course I embrace their unique perspective on the world; I learn more than any Professor with a Phd some days, just during dinner. However, I also catch their pain, their loneliness, their isolation. Some days, like today, when my cup has been mentally and emotionally drained I am guilty of snapping, pushing away and after I calm down feeling like a complete failure.
I know tomorrow my cup will be full again, I will accept and embrace again, but please no one judge me because when it's empty I just need some space, a break, or even a dumb joke on twitter. Autism is a double edged sword.
Friday, May 4, 2012
Wednesday, May 2, 2012
Caregiver
"You can only handle what God gives you.......You're SuperMom..............I don't know how you do it." Remind you of anyone? Fecal streams of platitudes like that only exude from those who do not deal with special needs everyday. They truly mean well, but after the 75th version of the same phrase you become numb to it all. That's the peripheral edging I hear on a daily basis being parent to my three. I get a thump on the back and nothing else. Nice, but in all honesty, empty.
I was thinking the last few days about caregivers. I had to rewrite my CV /resume recently. In fact I had to rewrite it about four times, depending on the job application. Despite my numerous diplomas, degrees, job experience and post grad work I had to explain being out of the taxpaying workforce the last 6 years. Stay at home Mom doesn't quite cut it, especially if those reading said resume actually knew what that meant.
I chose the title caregiver, (perhaps all stay at home parents should really). I have given my all to three very brilliant yet also very dependent children. My, and their Father's sacrifice for these children has had them move three times in two states, file bankruptcy, deal with foreclosure and still live paycheque to paycheque. (That's paycheck for all American types;)
Caregiver!! Just looks like a filler on a resume to explain away babies at expensive preschools while Mommy plays tennis. If my prospective employers really knew about what it really stands for; resilience, tenacity, unconditional love, righteous anger, hitting that mat every day for our child. If they only knew, they'd beg us for the same commitment.
I was thinking the last few days about caregivers. I had to rewrite my CV /resume recently. In fact I had to rewrite it about four times, depending on the job application. Despite my numerous diplomas, degrees, job experience and post grad work I had to explain being out of the taxpaying workforce the last 6 years. Stay at home Mom doesn't quite cut it, especially if those reading said resume actually knew what that meant.
I chose the title caregiver, (perhaps all stay at home parents should really). I have given my all to three very brilliant yet also very dependent children. My, and their Father's sacrifice for these children has had them move three times in two states, file bankruptcy, deal with foreclosure and still live paycheque to paycheque. (That's paycheck for all American types;)
Caregiver!! Just looks like a filler on a resume to explain away babies at expensive preschools while Mommy plays tennis. If my prospective employers really knew about what it really stands for; resilience, tenacity, unconditional love, righteous anger, hitting that mat every day for our child. If they only knew, they'd beg us for the same commitment.
Friday, April 13, 2012
Planets
Last week I lost a friend. At least I think technically I did. We used to live a few doors down from each other and my easy going Aspie connected with her son. If I had suggested her son was also splashed with Asperger's I suspect I would have lost that friend a little bit earlier. It's all good though, in so many ways we are all sprayed with something: Aspie, Adhd, Ocd, Anxiety, well, something neurological.
I have been dwelling on and off about losing that friendship. In reality it was only when she was a stay at home parent and I a forced stay at home parent, we connected. She started work while I could neither afford it or energetically absorb that and three children with special needs. We drifted. I saw it, I knew. She would call me on her commute home from work....she was bored. I was knee deep in medication needs, meltdowns and the most full on part of my day. My father (aka asshole sperm donor) does the same. He likes to call between dinner and bedtime. It suits him on his Western European time frame. I have begged he not......he forgets. Thus, I ignore his calls.
All of the above had me over the last few weeks really absorb how others truly do NOT understand the planet of special needs, the planet of Autism. Autism spins, regardless of your schedule, your needs or your demands. Autism, Early Onset Bipolar, Adhd and Sensory Processing Disorder is far too busy to care about your time frame, open calendar, boredom, insomnia.
We truly are planets, I and my three continents on ours and everyone else on theirs. Some planets are bigger than others as they hold more experiences. That's ok. However, remember it is only Earth, the third smallest of the solar system that holds sentient life. One of the smallest in our solar system. Your Planet may be massive and homogeneous, mine is small and devoid of bullshit. Enjoy your planet. Make sure it doesn't burst.
I have been dwelling on and off about losing that friendship. In reality it was only when she was a stay at home parent and I a forced stay at home parent, we connected. She started work while I could neither afford it or energetically absorb that and three children with special needs. We drifted. I saw it, I knew. She would call me on her commute home from work....she was bored. I was knee deep in medication needs, meltdowns and the most full on part of my day. My father (aka asshole sperm donor) does the same. He likes to call between dinner and bedtime. It suits him on his Western European time frame. I have begged he not......he forgets. Thus, I ignore his calls.
All of the above had me over the last few weeks really absorb how others truly do NOT understand the planet of special needs, the planet of Autism. Autism spins, regardless of your schedule, your needs or your demands. Autism, Early Onset Bipolar, Adhd and Sensory Processing Disorder is far too busy to care about your time frame, open calendar, boredom, insomnia.
We truly are planets, I and my three continents on ours and everyone else on theirs. Some planets are bigger than others as they hold more experiences. That's ok. However, remember it is only Earth, the third smallest of the solar system that holds sentient life. One of the smallest in our solar system. Your Planet may be massive and homogeneous, mine is small and devoid of bullshit. Enjoy your planet. Make sure it doesn't burst.
Friday, April 6, 2012
I wait
We met on a Tuesday.
Honestly, I don't remember the day. I do remember we met. Late for us both, you were willing to call me, listen to my day, my worries, my fears. You listened.
You never judged me, you never named me, you just listened. Had I known how that call would have rooted itself. If I had known what we were growing. Perhaps it's best I didn't know, couldn't see the next 17 months. I might have run so far, or you might have never called back. I didn't run and you called again.
Flaws and blemishes have become obvious I know, but here we are, no one's running, we both keep calling.
One day we'll meet again, perhaps on a Tuesday.
In the mean time I will await the other 6 days.
I just wait for you!
Honestly, I don't remember the day. I do remember we met. Late for us both, you were willing to call me, listen to my day, my worries, my fears. You listened.
You never judged me, you never named me, you just listened. Had I known how that call would have rooted itself. If I had known what we were growing. Perhaps it's best I didn't know, couldn't see the next 17 months. I might have run so far, or you might have never called back. I didn't run and you called again.
Flaws and blemishes have become obvious I know, but here we are, no one's running, we both keep calling.
One day we'll meet again, perhaps on a Tuesday.
In the mean time I will await the other 6 days.
I just wait for you!
Monday, April 2, 2012
Autism Day.....same as yesterday!
April 2nd was Autism Awareness Day. I had grand notions of links and diatribes, explanations, moving stories and emotive words. I had my blue light bulb. I was poised, ready. I was about to tell you all about the enormity, the dignity and the need to pay attention. Then I awoke.
Screams, hollers, toilet paper strewn around the house, demands for hot dogs for breakfast and oppositional defiance that makes a rock look argumentative. Out of control hyperactivity, little bodies squeezing me so hard it was beyond a hug and my kidney's were texting me to be donated. As a sensory introvert, you may as well scrape those nails on the chalk board already. In fact, I spent the ensuing hours playing zone defense; tag team is not just a sports analogy you know. Somewhere in the middle one of the unholy trinity made it to therapy. It was a miracle anyone was fed today.
This is not everyday, however it's not an unusual day for me. I can handle the large hurdles like Atlas, shoulder it and muddle on. It's the little things that tear me down, like muscle torn with each overextended stretch. The need to be more than parent, provider and caregiver. It's when I have to be Father as well as Mother, when I have to be confident, best friend, play mate, punching bag and the most hated thing on the planet. Most hated, because I love them so much I can say "No!" and stick to it. Yes, sound like Neurotypical parenthood, doesn't it? Now add the bubbles to the bath water. That's autism, your typical world, effervescent, hissing, bubbling and frothing.
Aware! Oh yes, I am aware, I have been aware for about 12 years now. I am extremely aware that tomorrow my 8 year old son, officially diagnosed with Autism this year has to be sedated completely for a small filling. That's $400 of awareness with dental insurance. Autism is not aware, it is heedless. It's agenda is blinkered and unrelenting. To be aware is something, to battle the heedless is noble and ironically also relentless.
Screams, hollers, toilet paper strewn around the house, demands for hot dogs for breakfast and oppositional defiance that makes a rock look argumentative. Out of control hyperactivity, little bodies squeezing me so hard it was beyond a hug and my kidney's were texting me to be donated. As a sensory introvert, you may as well scrape those nails on the chalk board already. In fact, I spent the ensuing hours playing zone defense; tag team is not just a sports analogy you know. Somewhere in the middle one of the unholy trinity made it to therapy. It was a miracle anyone was fed today.
This is not everyday, however it's not an unusual day for me. I can handle the large hurdles like Atlas, shoulder it and muddle on. It's the little things that tear me down, like muscle torn with each overextended stretch. The need to be more than parent, provider and caregiver. It's when I have to be Father as well as Mother, when I have to be confident, best friend, play mate, punching bag and the most hated thing on the planet. Most hated, because I love them so much I can say "No!" and stick to it. Yes, sound like Neurotypical parenthood, doesn't it? Now add the bubbles to the bath water. That's autism, your typical world, effervescent, hissing, bubbling and frothing.
Aware! Oh yes, I am aware, I have been aware for about 12 years now. I am extremely aware that tomorrow my 8 year old son, officially diagnosed with Autism this year has to be sedated completely for a small filling. That's $400 of awareness with dental insurance. Autism is not aware, it is heedless. It's agenda is blinkered and unrelenting. To be aware is something, to battle the heedless is noble and ironically also relentless.
Wednesday, March 14, 2012
The Race of Autism
Dearest Jacob, today you caught me off guard, the way a sleeping soldier, snoozing against his wall in peacetime is suddenly jolted awake with horns and the rushing tide of the shouts of fear and unpreparedness. There I was watching the beginning of my sports show that comes from the UK. As usual, I only focus on the first 12 or so minutes, once it gets to rugby, golf and cricket it's already been deleted. There you were, slumped on the couch, I was casting my eye and ears between something 'terribly important' on the internet and half taking in the initial headlines of said sport show.
The commentators spat the headlines and updates out like a fiery geyser, attempting to rev up their unknown audience. I paid minimal attention as I awaited to hear of my football team (soccer you irreverent lot ;). Liverpool had battered Everton in the Liverpool Derby and I was eager to see the highlights and the interviews. I turned my head to the screen. You asked a question; I heard you speak but not your words. Frustrated, I asked what you said.
"Why does that man speak with a British accent Mom?"
I look to see a non UK player on the screen. No one there but the sports anchor and his co anchor.
"Who love?"
"The man in the suit......is he faking an English accent?"
"The man on the left?"
"Yes."
"Why would you think he shouldn't have an English accent hun?"
"But he doesn't look English....."
I knew immediately why Jacob asked this innocent question, although I struggled with my immediate response. The Sports anchor was black. I inhaled my mortification in a single breath and turned to my son.
"How many black people in America have an American accent?"
"All of them Mom."
"How many white Americans do you feel have an American accent love?"
"About half."
"I mean not including Latino's hun."
"Oh, then, most."
"How many white people in England do you feel have an English accent?"
"Well all....duh..."
"OK, how many Black people in England have an English accent sweetie?"
Jacob's little face scrunched up, his head tilted like it always does when he is struggling with a quandary. "Well, none. There are no black people in England!!"
My heart snagged on emotional muscle tissue, it tore and spotted blood on my ego. I was stunned into silence. I have always prided myself on being a pretty liberal, left winger. I assumed' my children were absorbing my openness by how we lived our lives and by daily family cultural osmosis. However, add to that Jacob's brain is not wired like yours or mine. His autism and our coexistence of almost 12 years had me fooled into believing I was in step with his cultural understanding.
He and I talked a bit about people speaking languages with accents and no matter their skin color it was based on their country and their upbringing. I could see he understood the concept but in his mind he was shaking his neurological head. It's time Jacob met the country that gave birth to his translucent Mom, and be exposed to all of Ireland and Britain. We are all now mixed race and inclusion, regardless of our accents. How nice though, to deal with race based on accent and not necessarily pigmentation. Autism is a gift.
The commentators spat the headlines and updates out like a fiery geyser, attempting to rev up their unknown audience. I paid minimal attention as I awaited to hear of my football team (soccer you irreverent lot ;). Liverpool had battered Everton in the Liverpool Derby and I was eager to see the highlights and the interviews. I turned my head to the screen. You asked a question; I heard you speak but not your words. Frustrated, I asked what you said.
"Why does that man speak with a British accent Mom?"
I look to see a non UK player on the screen. No one there but the sports anchor and his co anchor.
"Who love?"
"The man in the suit......is he faking an English accent?"
"The man on the left?"
"Yes."
"Why would you think he shouldn't have an English accent hun?"
"But he doesn't look English....."
I knew immediately why Jacob asked this innocent question, although I struggled with my immediate response. The Sports anchor was black. I inhaled my mortification in a single breath and turned to my son.
"How many black people in America have an American accent?"
"All of them Mom."
"How many white Americans do you feel have an American accent love?"
"About half."
"I mean not including Latino's hun."
"Oh, then, most."
"How many white people in England do you feel have an English accent?"
"Well all....duh..."
"OK, how many Black people in England have an English accent sweetie?"
Jacob's little face scrunched up, his head tilted like it always does when he is struggling with a quandary. "Well, none. There are no black people in England!!"
My heart snagged on emotional muscle tissue, it tore and spotted blood on my ego. I was stunned into silence. I have always prided myself on being a pretty liberal, left winger. I assumed' my children were absorbing my openness by how we lived our lives and by daily family cultural osmosis. However, add to that Jacob's brain is not wired like yours or mine. His autism and our coexistence of almost 12 years had me fooled into believing I was in step with his cultural understanding.
He and I talked a bit about people speaking languages with accents and no matter their skin color it was based on their country and their upbringing. I could see he understood the concept but in his mind he was shaking his neurological head. It's time Jacob met the country that gave birth to his translucent Mom, and be exposed to all of Ireland and Britain. We are all now mixed race and inclusion, regardless of our accents. How nice though, to deal with race based on accent and not necessarily pigmentation. Autism is a gift.
Thursday, March 1, 2012
The Chosen
I remember my Mother commenting on how the babies we bear, whether to term or not choose their life's start, in a sense choose their family. It seemed a wonderfully easy and ethereal plane to believe in, especially as a young woman, not yet to achieve that state of pregnancy and motherhood. In the Bible, most especially the Talmud, the Hall of Souls is known as The Guf.
"The mystical significance of The Guf is that each person is important and has a unique role which they, with their unique soul, can fulfill. Even a newborn brings the Messiah closer simply by being born."
Such a perception and belief is comforting, knowing every soul born is a rock across the tumultuous river that we pivot and slip upon to reach the "Messiah." Of course this is probably only so if one believes in the concreteness of the bible and /or the Talmud. As an older child and a teenager these mystical concepts fed me like a spiritual milk. I was so desperate to believe in a reasoning for why certain children are born with needs beyond the everyday, or why someone I knew was suddenly not "themselves" after a car wreck or a medical procedure. Even as young as my mid teens I had a deep draw to those around me with special needs, or as I now call them, needs. I can not explain it and I gave up a long time ago attempting to pin down why. That is and maybe truly beyond me, that's ok too. Not everything, including intuition or perception needs scientific swordsmanship.
Having said as much, I have been struggling with something beyond my comprehension. After years of catechism, a lapse, an extended involvement with the Episcopal Church, I have finally found my peace with the belief there is no built gathering of stepping stones, straight and pointed across that river of spiritualism. It is for so many a teetering balancing act, with limbs outstretched, waving, gripping their rocks; calling every mossy slip "God's will," or "faith's challenge."
Parenting my children, the ones with "needs," I skipped across the same stones and green, glassy rocks for so long. I could only see the next stone, the whitening rage or mild circular flow of the river that day. I kept looking down, fearful, what if I fall? Will my lungs with their heaviness and the Guf would be one less original soul? When I think back to my Mother's original epiphany, she was and is by no means a religious enforcer. She is attune with the Earth and understands the water. She has, within' her own rocks and river found a quiet peace in the midst of the torrent.
At times, when it's quiet or when my childrens' needs conquer an unimaginable milestone, I question if they chose me from The Guf.
I have watched my Mother, with a cocked head and an inquisitive eye for years now. How does she live midst the same surge, yet never slip or become immersed, never washes away?
"Go gently," she atones...."go gently." I pause, eyes fixed on her, she is not looking down, scanning the slickness of the next rock like I am. She is hunkered down on her rock, balanced, mid stream, looking up. Her straight poise is palpable, her hand dipped in water that dances around her fingers like a well known friend, caressing her form. I hunker down, some stones behind her, no longer studying the next rock, or the farther shore. I allow my hand to atone and go gently with the river laughing around my fingers.
"The mystical significance of The Guf is that each person is important and has a unique role which they, with their unique soul, can fulfill. Even a newborn brings the Messiah closer simply by being born."
Such a perception and belief is comforting, knowing every soul born is a rock across the tumultuous river that we pivot and slip upon to reach the "Messiah." Of course this is probably only so if one believes in the concreteness of the bible and /or the Talmud. As an older child and a teenager these mystical concepts fed me like a spiritual milk. I was so desperate to believe in a reasoning for why certain children are born with needs beyond the everyday, or why someone I knew was suddenly not "themselves" after a car wreck or a medical procedure. Even as young as my mid teens I had a deep draw to those around me with special needs, or as I now call them, needs. I can not explain it and I gave up a long time ago attempting to pin down why. That is and maybe truly beyond me, that's ok too. Not everything, including intuition or perception needs scientific swordsmanship.
Having said as much, I have been struggling with something beyond my comprehension. After years of catechism, a lapse, an extended involvement with the Episcopal Church, I have finally found my peace with the belief there is no built gathering of stepping stones, straight and pointed across that river of spiritualism. It is for so many a teetering balancing act, with limbs outstretched, waving, gripping their rocks; calling every mossy slip "God's will," or "faith's challenge."
Parenting my children, the ones with "needs," I skipped across the same stones and green, glassy rocks for so long. I could only see the next stone, the whitening rage or mild circular flow of the river that day. I kept looking down, fearful, what if I fall? Will my lungs with their heaviness and the Guf would be one less original soul? When I think back to my Mother's original epiphany, she was and is by no means a religious enforcer. She is attune with the Earth and understands the water. She has, within' her own rocks and river found a quiet peace in the midst of the torrent.
At times, when it's quiet or when my childrens' needs conquer an unimaginable milestone, I question if they chose me from The Guf.
I have watched my Mother, with a cocked head and an inquisitive eye for years now. How does she live midst the same surge, yet never slip or become immersed, never washes away?
"Go gently," she atones...."go gently." I pause, eyes fixed on her, she is not looking down, scanning the slickness of the next rock like I am. She is hunkered down on her rock, balanced, mid stream, looking up. Her straight poise is palpable, her hand dipped in water that dances around her fingers like a well known friend, caressing her form. I hunker down, some stones behind her, no longer studying the next rock, or the farther shore. I allow my hand to atone and go gently with the river laughing around my fingers.
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