Dearest,
My apologies.
It was no accident you chose me,
We were the same, raging
in a world that blinked
indifference.
A fresh soul delivered from your
warm immersion into
sensory terror.
Your brain already fighting its mismatched puzzle.
Neurons bouncing like beads clicking against the floor.
Images of warm deep embraces-edged
into the distance.
Childhood pleasures morphed into sensory diets,
play therapies,
mood stabilizers.
No Parenting magazine knew you.
Five years besieged
by a mind brimming
confusion.
Wide black eyes glazed,
never willing to meet my gaze.
No immediacy of love,
It stood in the middle distance
trepidatious, edging silently forward,
a little,
at a time.
Until the day we heard that gentle porcelain doctor say
“autism spectrum.”
There you stood, and I saw you
for the first time
looking right at me.
Wednesday, February 22, 2012
Wednesday, February 8, 2012
Falling in and out of love!
When one's child is born with an invisible yet neurologically different need, you are met with a physically beautiful and healthy baby. However, until symptoms appear you just see that. When you choose to breastfeed and thus room in with him you are met with certain supports, to do with nursing, bathing and the like. When he starts screaming at 12 hours old he is planted on your exhausted body, as apparently nursing him will stop it. It does not. You are left with this teeny entity that had been telling you he has been alive from 14 weeks in utero. The nurses can't manage his needs, thus he is thrust on your lap.
In hindsight, I should have checked myself out and gone home. At least my baby's father would be there to support me, instead of as the nurses and doctor's did; chastise me for immediately recognizing, this baby needs movement, constantly. It was instinct with me. I walked the halls, got yelled at by night staff for doing so. From the very moment this little boy was born he needed more than the regular world would give. That night the nurse yelled at me for marching the halls with him. I in post partum glory told her she was a fucking cunt and she could fuck herself. Suddenly I was listened to, was given the empty neo natal unit and a rocking chair.
My life with Jacob began with me fighting for him, and I have no doubt will end with it.
Here we are almost 12 years later, I have two other kids, both with needs of their own. The issue with having children with or without invisible disabilities is, you fall in love, out of love and in love again. Of course you always "Love" them, however, their needs, personalities, behaviors and reactions truly test you to the point of wanting to run away. Yes, I have googled how to run away. You may judge, like I see society easily do, or you can at lease listen. We do not want your pity or your judgement, just understanding.
We fall in and out of love with our children all the time, yet for some reason, the special needs parent is berated the most when they admit to this.
I was censured and made feel like dross the night I instinctively knew this child needed to be walked. Next time you see a parent with an out of control child.........think, count to ten and ask yourself. "Is this my place to judge?"
You know what, I still "walk" Jacob, in different ways now, although no one ever bother's to ask how. How sad, and what a waste of marvelous information.
In hindsight, I should have checked myself out and gone home. At least my baby's father would be there to support me, instead of as the nurses and doctor's did; chastise me for immediately recognizing, this baby needs movement, constantly. It was instinct with me. I walked the halls, got yelled at by night staff for doing so. From the very moment this little boy was born he needed more than the regular world would give. That night the nurse yelled at me for marching the halls with him. I in post partum glory told her she was a fucking cunt and she could fuck herself. Suddenly I was listened to, was given the empty neo natal unit and a rocking chair.
My life with Jacob began with me fighting for him, and I have no doubt will end with it.
Here we are almost 12 years later, I have two other kids, both with needs of their own. The issue with having children with or without invisible disabilities is, you fall in love, out of love and in love again. Of course you always "Love" them, however, their needs, personalities, behaviors and reactions truly test you to the point of wanting to run away. Yes, I have googled how to run away. You may judge, like I see society easily do, or you can at lease listen. We do not want your pity or your judgement, just understanding.
We fall in and out of love with our children all the time, yet for some reason, the special needs parent is berated the most when they admit to this.
I was censured and made feel like dross the night I instinctively knew this child needed to be walked. Next time you see a parent with an out of control child.........think, count to ten and ask yourself. "Is this my place to judge?"
You know what, I still "walk" Jacob, in different ways now, although no one ever bother's to ask how. How sad, and what a waste of marvelous information.
Friday, January 20, 2012
An Unexpected Gift
Life has for want of a better analogy been a bit of a roller coaster lately. No, let me clarify, roller coaster with Nascar and Drunk Driving joyrider's thrown in for good measure. I traced it out on a blog post months back, but to re illustrate I was not born here in the US. I have however been a legal resident some 13 years now.
Being an immigrant is such a deep and shadowy well, most of us smile through it and the ignorant questions (yes, we do have dogs in Ireland, yes someone really asked me that once). Over time we learn to use the wattle and sinew from our experience and build domed walls around us with carefully chosen trapdoors and side tunnels, so we can enter and exit these wax work personas. These same doors are allowed let other's enter, although we in many ways blindfold them and move the doors once they leave our domed shield.
It takes many years and some considerable self awareness to reach that state of understanding. I have known many an Irish immigrant who went the opposite way, family included, adopting their new culture and country too fast and furiously, burying any ashes from their existence of origin. I can understand that as well. The pressure to assimilate and blend in is overwhelming, some days it may just be easier to give in. This has never been the case for me; in fact as I mature and get older my need for self identity as being Irish grows stronger. It has taken 13 years but I have finally begun to separate out the two spaces that occupy my existence. One does not have to push against the other, and the other does not need to pull away so forcefully.
In fact, the more I mature, the more I see that both can coexist comfortably. This does not have to be a battle where the trap doors and tunnels must move like the stairs at Hogwarts. One does not out measure the other, despite geography. This is less about geography, or even culture; this is about identity. Identity is not born, it is developed, it is nurtured and molded and held and wanted.
By last Fall, 2011, I was ready to cease this tug of war within' my soul and I let it all go. As such, on Thursday, January 19th, 2012 at 9:45am eastern Standard Time I interviewed and passed for US citizenship. Well, technically I have been "recommended" for citizenship, a formality. Last but not least will be a swearing in ceremony and I say farewell to that piece of plastic that has kept me legal these last 13 years, the Green Card (that oddly enough was always a mottled brown.)
I have begun to tear down that muddied dome and throw open it's doors.
There is something infinitely more powerful here though. Back in 2000 and I was interviewing for my Green Card, the officer conducting the interview insisted if I did not take my then husband's name it was a "severe red flag." Essentially I was bullied into taking a name my spouse and I had discussed would never be an option. I left that interview and instead of elation as I had been promised my Permanent Resident's card within' three weeks, but rather in an odd sense stripped of something, something important.
This week, 13 years later the answer sparkled clear, like the Northern Light's on my mind, when the olive skinned, petite and shining officer asked me, "and what name would you like on your naturalization Certificate, your maiden or married name?" A smile rippled over my face, "I can choose?'. "Of course."
It's been 13 years, and after I tear down the rest of these muddy, dry clay walls, I get the greatest gift, citizenship of course, but more importantly, I get my name., Deirdre Maria McCarthy-Dillon, my identity.
Being an immigrant is such a deep and shadowy well, most of us smile through it and the ignorant questions (yes, we do have dogs in Ireland, yes someone really asked me that once). Over time we learn to use the wattle and sinew from our experience and build domed walls around us with carefully chosen trapdoors and side tunnels, so we can enter and exit these wax work personas. These same doors are allowed let other's enter, although we in many ways blindfold them and move the doors once they leave our domed shield.
It takes many years and some considerable self awareness to reach that state of understanding. I have known many an Irish immigrant who went the opposite way, family included, adopting their new culture and country too fast and furiously, burying any ashes from their existence of origin. I can understand that as well. The pressure to assimilate and blend in is overwhelming, some days it may just be easier to give in. This has never been the case for me; in fact as I mature and get older my need for self identity as being Irish grows stronger. It has taken 13 years but I have finally begun to separate out the two spaces that occupy my existence. One does not have to push against the other, and the other does not need to pull away so forcefully.
In fact, the more I mature, the more I see that both can coexist comfortably. This does not have to be a battle where the trap doors and tunnels must move like the stairs at Hogwarts. One does not out measure the other, despite geography. This is less about geography, or even culture; this is about identity. Identity is not born, it is developed, it is nurtured and molded and held and wanted.
By last Fall, 2011, I was ready to cease this tug of war within' my soul and I let it all go. As such, on Thursday, January 19th, 2012 at 9:45am eastern Standard Time I interviewed and passed for US citizenship. Well, technically I have been "recommended" for citizenship, a formality. Last but not least will be a swearing in ceremony and I say farewell to that piece of plastic that has kept me legal these last 13 years, the Green Card (that oddly enough was always a mottled brown.)
I have begun to tear down that muddied dome and throw open it's doors.
There is something infinitely more powerful here though. Back in 2000 and I was interviewing for my Green Card, the officer conducting the interview insisted if I did not take my then husband's name it was a "severe red flag." Essentially I was bullied into taking a name my spouse and I had discussed would never be an option. I left that interview and instead of elation as I had been promised my Permanent Resident's card within' three weeks, but rather in an odd sense stripped of something, something important.
This week, 13 years later the answer sparkled clear, like the Northern Light's on my mind, when the olive skinned, petite and shining officer asked me, "and what name would you like on your naturalization Certificate, your maiden or married name?" A smile rippled over my face, "I can choose?'. "Of course."
It's been 13 years, and after I tear down the rest of these muddy, dry clay walls, I get the greatest gift, citizenship of course, but more importantly, I get my name., Deirdre Maria McCarthy-Dillon, my identity.
Sunday, January 8, 2012
Cutting Through
I've never been a cutter...ever. However, I have immense empathy for those that do. My first exposure to it was in college. A sweet guy from Newcastle, we shared a bed, just held each other all night. I thought how incredible he was he never pushed his sexual agenda. Next morning he showed me his scars. I was 20 and I completely flipped out and dashed down to my friend's room.
This was foreign to me, this was new, this was terrifying. I suspect my instincts were solid, although I handled it badly. He was a sweet man who felt comfortable enough to share his most secret history. I abandoned him, I ran, without stopping to think and ask "why?" Yes, I was a kid, I was inexperienced and I was selfish. Today, it would be a very different situation. I have been through so much trauma, I would now sit up and listen to the sweet gentle giant from Newcastle. Not suggesting there was a relationship in the wings, but certainly a dialogue. I let that man down. He reached out, I pushed back so hard he fell over the precipice.
Something similar happened last night. I reached out. I bared my 'scars' and instead was met with compassion beyond compare. Complete stranger's as well as trusted friends and intimate loves, the latter two I was beginning to shut out from simple fear, reached out. The crowd gathered around me and circled me like a comforting quit.
I have never been a cutter, but I understand those that do. Numbness needs a razor blade. We cut when on our own, I choose not to be on my own anymore.
This was foreign to me, this was new, this was terrifying. I suspect my instincts were solid, although I handled it badly. He was a sweet man who felt comfortable enough to share his most secret history. I abandoned him, I ran, without stopping to think and ask "why?" Yes, I was a kid, I was inexperienced and I was selfish. Today, it would be a very different situation. I have been through so much trauma, I would now sit up and listen to the sweet gentle giant from Newcastle. Not suggesting there was a relationship in the wings, but certainly a dialogue. I let that man down. He reached out, I pushed back so hard he fell over the precipice.
Something similar happened last night. I reached out. I bared my 'scars' and instead was met with compassion beyond compare. Complete stranger's as well as trusted friends and intimate loves, the latter two I was beginning to shut out from simple fear, reached out. The crowd gathered around me and circled me like a comforting quit.
I have never been a cutter, but I understand those that do. Numbness needs a razor blade. We cut when on our own, I choose not to be on my own anymore.
Wednesday, December 28, 2011
The PTSD of ASD and BP!
War, conflict, psychological assault. Post Traumatic Stress Disorder. Quick, scan around for the dismembered soldier. That's the rule right, only applies to boys and girls with blown off limbs, that we then fawn over and thank endlessly for their service, regardless of what that "service" entailed. It's not these people in uniform that we should question for the reverence for the military, a reverence that boarders on psychotic sycophantic God worship. I have see the latter in people I would call friends, who outside of this deification of the military are quite rational and reasonable.
The military, especially in the post September 11th world appear to have a patent on PTSD. I know it's unbelievably prevalent in the forces and as they have all filtered home since the end of the Iraq War it will bubble up in the societal euphoria, thus quashing it like sand kicked on the glowing embers. PTSD though is a human condition, not quartered off by the need to enter a mine riddled desert or IED strewn dust road.
Autism, Pediatric Bipolar Disorder.... ha, gotcha. See the first sentence again. The experience is so very different, the road not as dust ridden and choking. Still the psychological experience, the reaction, the outcome, unless treated is the same.
"Psychiatrists believe that PTSD can only be correctly diagnosed after at least a month has passed since the traumatic event. Before then the condition is considered a post-traumatic stress, but not yet post traumatic stress disorder. In addition the person must display all 3 classes of PTSD symptoms & necessary bases to differentiate it from other mental disorders.
- Class 1 symptoms: the sufferer re-experiences the traumatic incident
ex. nightmares, flashbacks. - Class 2 symptoms: the sufferer displays avoidance, wants to stay away from anything that may possibly remind her/him of the trauma. May also display lack of responsiveness or interest to all life circumstances.
ex. sights, smells, sounds, conversations associated or reminding of trauma, unable to enjoy once joyful activities or have loving feelings - Class 3 symptoms: hyperarousal
ex. irritable all the time or inability to sleep.
To raise and parent a child with a complicated neurological disorder is a draining existence, especially for the primary caregiver, usually the Mother. Let me explain my symptoms as I hold my beating scarred heart in my trembling hand for you all. I don't really have nightmares or flashbacks per se, although I do have vivid dreams, almost always being chased by people who are supposed to love and accept me unconditionally. I do avoid, I stay indoors, I dislike meeting new people; it's a mental and emotional wrench to even answer the phone to close friends. Mainly as they wish to talk about fluff; I am no where near fluff on a daily basis.
I have a marvelous wall, it has a retractable trigger, it can shuttle up or down depending on my mood, my company or my environment. I used to read constantly, everywhere even as I walked, I mean I would shove books under my school sweater and sneak out to recess with it just to read. These days I can barely get though an article without losing focus. I do not sleep. I nap. It's the best I can manage. I am scolded constantly by those who truly love me that I never sleep, or sleep awkward hours. I liken it to a recurring illness. I can not control it.
Irritable.
I laugh in a silly ironic way here. I spend my days pulling myself out of irritability and living an open, cheerful exterior for the one's I love. Periodically I slip, little things trigger me. Having said that I have always been like that with irritability and anger, but an abusive alcoholic father and childhood sexual abuse ensured that one, (no the sexual abuse was not due to my father.....put your knives away ;).
I was dealing with my PTSD (as we all do in our own way) and slowly working through it. Then life gave me childhood neurological disorders, from birth. Jacob came out screaming and throwing up, and it didn't stop for two years. By the time he was three I 'knew' this was something else. Took another year to get a psychiatrist to concur. John arrived in a gentle earthquake, happy, quiet and non verbal until he was four. Again I 'knew.' I spent the next 6 years with psychiatrists, psychologists, neuropsychologists, developmental pediatricians, special schools, special education meetings, occupational, speech therapy. I fought with the state for medicaid, I fought with anyone who tried to nail my children into their designated corner. I simply fought.; I fought all....the....time.
It got to the point that anyone who even raised a quizzical eyebrow was deemed an enemy combatant and I was in immediate conflict . I have been doing this for 11 years. I am burnt out. I have nightmares, I avoid life, I choose numbness over feeling, my central nervous system is in constant flux.
I am tired, yet, I know no other life. PTSD is like the Python that consumes prey. We are digested slowly.
Monday, December 19, 2011
Lollie Laughs
It was agreed upon.
I knew we were to meet; her photograph presented, yellowed with age and youth,
On the bus I held his hand, the one with the serrated scar. I trace it's zagging map with the pad of my finger,
Comforting. A trauma story told in each depression and jagged rivet, x-rayed against the light touch of my swirling print.
Chattering's of a thousand women saturate the top deck, embroiling it in the years of gossip and floral scented regret. Today, the bones of women talk about nothing, talk about everything.
We do not talk, we sit, hold hands, I trace his trauma.
Stop please!
The gates are wrought with iron, imbued with hands that have pushed and pulled for one and a half centuries. Our steps mocked with each pebbled cry, and swift stride. His mission pure. He knows she is here. She knows too. I can hear her, she's laughing. I think we would have played together once.
Trudging slender lanes of pebble, dust and marble. Cracked tombs like gaping open jaws. I ignore them, he hears her. He knows her playground is here.
Grandmother May's etched name embraces her in stone, warming it. Twin yellow tall stemmed flowers sit at it's margin, one knocked over in slain solitude.
Instinct affects me like an electron; a leap and it's fixed.
A need to leave something overwhelms me. I do not. Standing, we share and it's done. I walk with him, holding his trauma in hand, I squeeze it a little harder. Lollie laughs.
I knew we were to meet; her photograph presented, yellowed with age and youth,
On the bus I held his hand, the one with the serrated scar. I trace it's zagging map with the pad of my finger,
Comforting. A trauma story told in each depression and jagged rivet, x-rayed against the light touch of my swirling print.
Chattering's of a thousand women saturate the top deck, embroiling it in the years of gossip and floral scented regret. Today, the bones of women talk about nothing, talk about everything.
We do not talk, we sit, hold hands, I trace his trauma.
Stop please!
The gates are wrought with iron, imbued with hands that have pushed and pulled for one and a half centuries. Our steps mocked with each pebbled cry, and swift stride. His mission pure. He knows she is here. She knows too. I can hear her, she's laughing. I think we would have played together once.
Trudging slender lanes of pebble, dust and marble. Cracked tombs like gaping open jaws. I ignore them, he hears her. He knows her playground is here.
Grandmother May's etched name embraces her in stone, warming it. Twin yellow tall stemmed flowers sit at it's margin, one knocked over in slain solitude.
Instinct affects me like an electron; a leap and it's fixed.
A need to leave something overwhelms me. I do not. Standing, we share and it's done. I walk with him, holding his trauma in hand, I squeeze it a little harder. Lollie laughs.
Wednesday, December 14, 2011
Nice to connect!
It's important to be real. If I'm not I will implode, both physically and emotionally. Raising three kids is work (of course), raising three with special needs is beyond that, that is a cosmic production.
I bring up being real as I have found so many special needs parents, especially Mother's, are intent on sculpting themselves into these pert, wee 'every mom.' They were given these angels for a reason and God dammit they will make sure they are painted into all corners of the globe and with a bullhorn just in case. People retweet and share lovely, cosy, fluffy links on being a parent with a special needs kid. Not just "us" Moms, but others, who only read what they want....only see what they are comfortable with. Yes, yes this is life. Reality and ick and tar and feathers and cold hard glares in cracked mirrors is not socially acceptable.
Too heavy? I agree. Today I was in the grocery store, by myself, thrilled with wheeling around the cart like it was on crack...mini vacation. I watch a perfectly quaffed, very attractive Mum swoop by with two toddler aged boys in her cart.
One made a break for it; I mean a full on sidekick, slash, upside down lower body backwards thrust out of it. It was a fucking sight to behold. Oh for Ashton Kutcher and his camera then! I was mesmerized as I watched Mum yank said prodigy back by his undies, like an act from Cirque De Soleil, all the while politely swearing and he roaring in all his stolen glory. She caught my chuckle, looked mortified and tried at act like nothing had happened. We all know, I am not exactly the shrinking violet kind, so I did say "Hey, got three myself." Her face melted like a gooey smore.
Why do I write about this? Well, after the last few days of feeling awful sorry for myself (which I refuse to take back) I was witness to a typical reality for a million Mums out there. There was a moment, a connection, a chink in my armor was loosened. In essence, these wee bastards are hard fuckin' work. Still, periodically we can grab them by the knickers and look up and another parent gives a look that communicates "Ok...you too???"
I bring up being real as I have found so many special needs parents, especially Mother's, are intent on sculpting themselves into these pert, wee 'every mom.' They were given these angels for a reason and God dammit they will make sure they are painted into all corners of the globe and with a bullhorn just in case. People retweet and share lovely, cosy, fluffy links on being a parent with a special needs kid. Not just "us" Moms, but others, who only read what they want....only see what they are comfortable with. Yes, yes this is life. Reality and ick and tar and feathers and cold hard glares in cracked mirrors is not socially acceptable.
Too heavy? I agree. Today I was in the grocery store, by myself, thrilled with wheeling around the cart like it was on crack...mini vacation. I watch a perfectly quaffed, very attractive Mum swoop by with two toddler aged boys in her cart.
One made a break for it; I mean a full on sidekick, slash, upside down lower body backwards thrust out of it. It was a fucking sight to behold. Oh for Ashton Kutcher and his camera then! I was mesmerized as I watched Mum yank said prodigy back by his undies, like an act from Cirque De Soleil, all the while politely swearing and he roaring in all his stolen glory. She caught my chuckle, looked mortified and tried at act like nothing had happened. We all know, I am not exactly the shrinking violet kind, so I did say "Hey, got three myself." Her face melted like a gooey smore.
Why do I write about this? Well, after the last few days of feeling awful sorry for myself (which I refuse to take back) I was witness to a typical reality for a million Mums out there. There was a moment, a connection, a chink in my armor was loosened. In essence, these wee bastards are hard fuckin' work. Still, periodically we can grab them by the knickers and look up and another parent gives a look that communicates "Ok...you too???"
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