When your 4 year old son decides in a fit of rage his best recourse is to attempt to break the body of an acoustic guitar over your back, his cries are suddenly heard loud and clear. At the time I was in reactionary mode; I didn't hear that muffled cry, embedded in the splintered case and sprung strings. I heard the dampened echos of something alright, but his cries were still crouched in the nonverbal corner of his autism. It was enough, it was the clearest he'd been since those first screams of afterbirth.
I sloughed off well meaning relatives, doctors and friends and he and I took that first step together. My justified fear carried me through the next few days; I blocked out the world, it's criticism, advice and judgement. Jacob and I took that broad step together into the realm of pediatric psychiatry.
He couldn't tell me much, his action with the guitar had said enough though. Eight years on and last week Jacob expressed an interest in his own medication regiment. After eight years of speaking for him, I both relieved and reluctant allowed that red headed chatterbox speak for himself. He asked to stop.
Who am I to say no? Three days in and weaned off his main mood stabilizer we wait. The wait is different now, because Jacob asked.
Tuesday, September 18, 2012
Thursday, August 30, 2012
When My Well Is Empty
Unfortunately I don't write about the everyday things that would warrant a daily, weekly or even biweekly experience. The Island of Autism and special needs is far more mundane than you think. You see, us parents, teachers, leaders, go out of our way to try to make everything the same. Changes in schedules, glitches in an everyday habit can throw our children and thus ourselves into a meltdown, anxiety attack or even as tonight proved a few flipped chairs, slammed doors and irrational yelling.
I sense you are either nodding or curious. While tantrumming over a negative response Hannah flipped chairs, by "accident," Jacob interfered with everyone's personal space and screeched for about 30 minutes, John declared he needed space and locked his door, (the sanest of all reactions).
Slammed doors? Oh, that would be me. Irritable and snappy, that would be me too. It was a long few weeks and today when school was out I was effectively on essential mode. If you know Maslow's Hierarchy of needs I was pretty much at the base two tiers of the pyramid, although you can snip out the sex bit ;)
http://two.not2.org/psychosynthesis/articles/maslow.htm
My children would be of course given food, water, shelter, clothing and security. Basically I was down to my absolute last enth of an ebb. Of course you tell that to a child. Now tell that to a child with hypersensitivity, hyper anxiety, hyper activity, and basically a need to treat your (meaning my) physical body like a lamp and they are the moth. The more I pleaded for space, the more my two sensory seekers sought me out. It wasn't anything mean either, just a need to feel loved, wanted, understood, held. Still, by the evening I had nothing left in my personal well to give. Even me, (and I know many close special needs parents can avow to this) was empty.My well was empty.
When this happens I simply need space, as simple as sitting on a bath tub with a locked door for 20 minutes; yet even then the fingers slid around under the door gap asking "Mommy...where are you!" I found time to go walk for 30 minutes, I arrived back to hysterics as to where I had been even though they had an adult with them. We were now in full fledged Autism and anxiety. This continued all night in flurries and clouds of moments. I flitted from crisis to crisis, like a ladybird with one wing. When I felt we were all finally settled, out of nowhere I was asked something actually quite neurotypical, I don't remember what it was, most probably something simple and easy. Yet my well was still empty. I stormed down the hall, slammed a door, heard a picture frame crash on the ground and fumed quietly to myself. Of course later I emerged and found my little girl playing with stickers. I apologized and she hugged me no matter what.
Isn't is comical, we deal with the special needs as best we can, maybe irritant and grumpily when overwhelmed, but after that a typical child request just edges us into slamming doors and fractured picture frames?! But, what a hug, and I know I didn't earn it.
I sense you are either nodding or curious. While tantrumming over a negative response Hannah flipped chairs, by "accident," Jacob interfered with everyone's personal space and screeched for about 30 minutes, John declared he needed space and locked his door, (the sanest of all reactions).
Slammed doors? Oh, that would be me. Irritable and snappy, that would be me too. It was a long few weeks and today when school was out I was effectively on essential mode. If you know Maslow's Hierarchy of needs I was pretty much at the base two tiers of the pyramid, although you can snip out the sex bit ;)
http://two.not2.org/psychosynthesis/articles/maslow.htm
My children would be of course given food, water, shelter, clothing and security. Basically I was down to my absolute last enth of an ebb. Of course you tell that to a child. Now tell that to a child with hypersensitivity, hyper anxiety, hyper activity, and basically a need to treat your (meaning my) physical body like a lamp and they are the moth. The more I pleaded for space, the more my two sensory seekers sought me out. It wasn't anything mean either, just a need to feel loved, wanted, understood, held. Still, by the evening I had nothing left in my personal well to give. Even me, (and I know many close special needs parents can avow to this) was empty.My well was empty.
When this happens I simply need space, as simple as sitting on a bath tub with a locked door for 20 minutes; yet even then the fingers slid around under the door gap asking "Mommy...where are you!" I found time to go walk for 30 minutes, I arrived back to hysterics as to where I had been even though they had an adult with them. We were now in full fledged Autism and anxiety. This continued all night in flurries and clouds of moments. I flitted from crisis to crisis, like a ladybird with one wing. When I felt we were all finally settled, out of nowhere I was asked something actually quite neurotypical, I don't remember what it was, most probably something simple and easy. Yet my well was still empty. I stormed down the hall, slammed a door, heard a picture frame crash on the ground and fumed quietly to myself. Of course later I emerged and found my little girl playing with stickers. I apologized and she hugged me no matter what.
Isn't is comical, we deal with the special needs as best we can, maybe irritant and grumpily when overwhelmed, but after that a typical child request just edges us into slamming doors and fractured picture frames?! But, what a hug, and I know I didn't earn it.
Tuesday, July 31, 2012
Hierarchy and Humility
There is a natural order to things, even if the thing itself is a bit off center. It's been around since I first became unofficially and then officially aware of my three puzzle piece's special needs. If you are a parent I know you will relate in some fashion to what I mean, regardless of your child's needs, typical or diverse. It's the hierarchy we are pushed into, the realm of others that technically should be on the same playing field. It starts as soon as we tell family and friends excitedly we are expecting, then ripples out into the community as bellies show and people question. You're in a select group now, a joyous clique. Of course along with that comes people's opinions, advice and stories. It's all met with appreciation, real and plastic and then there you are nuzzling with this blotchy pink warbling creature, one eye wide like Popeye; "he's a cryer..." we all laugh.
18 months later, he's still a crier, also not speaking much, if at all. He holds his belly a lot, writhes on the floor, spins, steps back and forth like going over the same four steps in a dance. Constant ear infections, adenoids removed, ENT's, multiple doctor's, specialists. My clique shrinks a bit, ok it shrinks a lot.
Play dates are rare, as months and years move on birthday invites diminish to nothing. Neighbor's whisper things you know you never want to hear. Once you receive a definitive diagnoses, no matter what it may be, you feel validated, angry, devastated, triumphant, weak, strong all at once. Now you know why that clique, that hierarchy of parenting had no place for you. Surely there must be other's out there....just....like....us.
This is the kicker, yes, there is a place, a clique, in fact many many cliques. And within' those there are sub cliques and off shoots and support groups and support groups that become support to survive the initial support group. There are play dates, jealousies aspersions and projections There are those who would shower you with advice and knowledge until you want to scream for a flotation device, then there are those that look you up and down like you really should take a bath, and why on Earth is your child shoe less and only in an over sized onesie. Yet most, so overwhelmed in their own closeted world have become so insulated out of fear, judgement and society; remember the one we used to know until the birthday invites vanished. Our children are still placed on pedestals to share symptoms, milestones, progressions. However, they are also compared in terms of regressions, symptoms and diagnostics. Sometimes it appears that if another's child is faring worse on the disability scale, you've been one upped. It took me years to realize that these parents do actually exist and I wasn't being paranoid. Took me years more to understand they are trapped, back in the stage of diagnoses, when they have no parental hierarchy to feel accepted. Literally trapped in a moment in time, terrified.
In my experience, it is near impossible to find someone who can share, grieve, celebrate, cry and laugh together, certainly in a local support structure. Even among each other we cleave to our leaden roofs, our thick emotional walls. The cliques are smaller yet still flourish in their own way, still most of us are frozen out. And again, as individuals we feel we are alone.
I'll be honest, I have cut out my fair share of those who I felt didn't "understand," or were too "involved" with their children's diagnoses. Nothing puts you on your egotistical horse more than dealing with three Aspie meltdowns and seeing someone tweet or post a blog about the tough time they had at the grocery store with one. I have also been told by several people they want nothing to do with me as they feel I am too much. And for a long time I was, I was too much. Don't get me wrong, I'm still a fiercefully opinionated, arrogant advocate and I am prone to pissing off one or two here and there, still experience tends to show one's humility, especially when one is ready to let it go, let it all go. I sense my letting go may take a bit more patience and time though. Hope that's ok.
18 months later, he's still a crier, also not speaking much, if at all. He holds his belly a lot, writhes on the floor, spins, steps back and forth like going over the same four steps in a dance. Constant ear infections, adenoids removed, ENT's, multiple doctor's, specialists. My clique shrinks a bit, ok it shrinks a lot.
Play dates are rare, as months and years move on birthday invites diminish to nothing. Neighbor's whisper things you know you never want to hear. Once you receive a definitive diagnoses, no matter what it may be, you feel validated, angry, devastated, triumphant, weak, strong all at once. Now you know why that clique, that hierarchy of parenting had no place for you. Surely there must be other's out there....just....like....us.
This is the kicker, yes, there is a place, a clique, in fact many many cliques. And within' those there are sub cliques and off shoots and support groups and support groups that become support to survive the initial support group. There are play dates, jealousies aspersions and projections There are those who would shower you with advice and knowledge until you want to scream for a flotation device, then there are those that look you up and down like you really should take a bath, and why on Earth is your child shoe less and only in an over sized onesie. Yet most, so overwhelmed in their own closeted world have become so insulated out of fear, judgement and society; remember the one we used to know until the birthday invites vanished. Our children are still placed on pedestals to share symptoms, milestones, progressions. However, they are also compared in terms of regressions, symptoms and diagnostics. Sometimes it appears that if another's child is faring worse on the disability scale, you've been one upped. It took me years to realize that these parents do actually exist and I wasn't being paranoid. Took me years more to understand they are trapped, back in the stage of diagnoses, when they have no parental hierarchy to feel accepted. Literally trapped in a moment in time, terrified.
In my experience, it is near impossible to find someone who can share, grieve, celebrate, cry and laugh together, certainly in a local support structure. Even among each other we cleave to our leaden roofs, our thick emotional walls. The cliques are smaller yet still flourish in their own way, still most of us are frozen out. And again, as individuals we feel we are alone.
I'll be honest, I have cut out my fair share of those who I felt didn't "understand," or were too "involved" with their children's diagnoses. Nothing puts you on your egotistical horse more than dealing with three Aspie meltdowns and seeing someone tweet or post a blog about the tough time they had at the grocery store with one. I have also been told by several people they want nothing to do with me as they feel I am too much. And for a long time I was, I was too much. Don't get me wrong, I'm still a fiercefully opinionated, arrogant advocate and I am prone to pissing off one or two here and there, still experience tends to show one's humility, especially when one is ready to let it go, let it all go. I sense my letting go may take a bit more patience and time though. Hope that's ok.
Thursday, July 12, 2012
To poo and beyond!
Shit!
After nine months of carrying them the first thing that is paid attention to is their pee and poo. Is it yellow, orange, crystalline? Is the poo brown, green, solid, liquid or pebble like. These are things no one tells you in the Lamaze class or the parenting class you take prior to birth. You remember, the one where you're taught to bath a Tiny Tears knock off and change him/her. In fact those classes go out of their way to avoid the shit factor.
You float through nine months blissfully (for those allowed that grace) and when it comes to it and you bear down you may actually shit yourself. I did as much with my 2nd baby, no epidural and no IV. I wandered in to the ER fairly sure I was in labour. In fact I was, and 8 cm agreed with me. It was literally a pop, catch and release situation. At some point mid push I shit myself. A nurse swooped in, no one knew, I mean I was barely aware. No one said, it was of course witnessed but never mentioned. Suited me fine.
If I had known it was a bit prophetic. This was my second baby, full term, healthy as an ox, great eater. We dubbed him the Stepford baby for about 11 months. Then I began to worry, ask questions, he was placid, almost vacant; he sat in his chair, watched us all, taking us all in. By age 2 1/2 he officially had 7 words. I screamed up and down the pediatricians hallways until they either heard or sent me away. At the time I didn't care, we weren't stagnant anymore as I was sent away to specialists. His initial diagnosis, chronic ear infections leading to slow speech development. I read that now and cry laughing. How many parents of placid Autistic's get that as the initial diagnosis? Autism came later.
Several years of speech and occupational therapy, great special education placements has meant that placid, non verbal little boy is a talkative, goofy, funny and brilliant child. To look at him he looks the same as all other NT (Neurotypical) peers. His public self still struggles with speech and the give and take of conversation. He is far more comfortable in his own world, space, science, math, bakugan and Skylanders.
You would never believe this brilliant nine year old really is not potty trained.
And there you have it people, they come out and all the people around you worry about their poo, then they're Nine and you are the only one worrying about their shit. Never ends really.
After nine months of carrying them the first thing that is paid attention to is their pee and poo. Is it yellow, orange, crystalline? Is the poo brown, green, solid, liquid or pebble like. These are things no one tells you in the Lamaze class or the parenting class you take prior to birth. You remember, the one where you're taught to bath a Tiny Tears knock off and change him/her. In fact those classes go out of their way to avoid the shit factor.
You float through nine months blissfully (for those allowed that grace) and when it comes to it and you bear down you may actually shit yourself. I did as much with my 2nd baby, no epidural and no IV. I wandered in to the ER fairly sure I was in labour. In fact I was, and 8 cm agreed with me. It was literally a pop, catch and release situation. At some point mid push I shit myself. A nurse swooped in, no one knew, I mean I was barely aware. No one said, it was of course witnessed but never mentioned. Suited me fine.
If I had known it was a bit prophetic. This was my second baby, full term, healthy as an ox, great eater. We dubbed him the Stepford baby for about 11 months. Then I began to worry, ask questions, he was placid, almost vacant; he sat in his chair, watched us all, taking us all in. By age 2 1/2 he officially had 7 words. I screamed up and down the pediatricians hallways until they either heard or sent me away. At the time I didn't care, we weren't stagnant anymore as I was sent away to specialists. His initial diagnosis, chronic ear infections leading to slow speech development. I read that now and cry laughing. How many parents of placid Autistic's get that as the initial diagnosis? Autism came later.
Several years of speech and occupational therapy, great special education placements has meant that placid, non verbal little boy is a talkative, goofy, funny and brilliant child. To look at him he looks the same as all other NT (Neurotypical) peers. His public self still struggles with speech and the give and take of conversation. He is far more comfortable in his own world, space, science, math, bakugan and Skylanders.
You would never believe this brilliant nine year old really is not potty trained.
And there you have it people, they come out and all the people around you worry about their poo, then they're Nine and you are the only one worrying about their shit. Never ends really.
Thursday, July 5, 2012
Too able to be disabled
A dear friend pointed out to me I hadn't blogged in a while. This is true. There's no real deep reason why, honestly I've been busy. School ended about 6 weeks ago and it's incumbent on me to tell you my children are too able to be allowed extended school year yet too disabled to attend day camp. The boys, now 12 and 9 did attend a special needs day camp for a week. They have gone there there there last few years. Hannah is in a different realm, she is too able to be disabled for sure. However, she also hugs the edge of Neurotypical enough so she craves friendship and interaction openly. I took a risk and enrolled her the same week in the day camp for typical children her age. I mean, it was a week. What on earth could happen?
Never ask such questions.
Cue one broken wrist through two bones and a cast from her thumb to her armpit. The boys both declared they hate their camp and never want to return. So, yep, I'm a tad overwhelmed. In the interim, all three are doing their best to disembowel each other, I have applied to nursing school and roll the fuck on school ....for us....all!!!
Never ask such questions.
Cue one broken wrist through two bones and a cast from her thumb to her armpit. The boys both declared they hate their camp and never want to return. So, yep, I'm a tad overwhelmed. In the interim, all three are doing their best to disembowel each other, I have applied to nursing school and roll the fuck on school ....for us....all!!!
Sunday, May 27, 2012
Different is OK!
I am prone to the odd documentary or even feature where the protagonist or central theme involves autism. Tonight I just finally finished "Dad's in Heaven with Nixon." Yes, alright, I'm more than prone, blame it on my back ground in Film Studies and having three silly Aspie beans. Most films and documentaries about Autism are hit and miss. One I may have been angsting for might be rather disappointing, while one that I stumble upon purely accidentally is flat out enlightening. The reality is Autism and film has has a rather "interesting" history.
I think this is where I am expected to laud the acting ability of Dustin Hoffman in Rainman. Forgive me if I don't. It may be exquisitely acted, have a fantastic sophomoric dalliance with relating to a person with autism, but please people it is an extreme, so far to the fantastical edge of reality it really has no place in the muck and mire of Kanner's Autism, Asperger's Syndrome, Pervasive Developmental Delay, Pervasive Developmental Delay (NOS), Retts Syndrome, Fragile X and yes, ADHD.
See what I did there? I took the perfect isolation of a Hollywood reflection of what so much of the public still consider's Autism and just bombarded you with real diagnostic reality.
Many of my compadres in blogging crime have already written about the impending changes in the DSM (Diagnostic and Statistical Manuel of Mental Disorders). The DSM was envisioned just before the end of WWI. I can only assume the pervasiveness of Freud, Jung and the burgeoning of psychiatry as a legitimate field was finally permeating. Unfortunately it certainly didn't mean the new born DSM was all that helpful. Still, it was the only real starting point modern day psychiatry had in terms of cohesive understanding. If I were to dissect each DSM and it's tangents I'd be here for years, into two Phd's and you would all be long gone screaming into the wilderness.
What I do want to focus on is what happened between 1980 and today. The DSM III emerged the year the US boycotted the Olympics (just thought I'd throw that in there, well, because I can). Sometime around 1986 Homosexuality was removed from the DSM as a mental illness; perhaps that may give you an inkling as to the sludge still stuck to the moral and well being of these supposed objective specialists.
The DSM morphed into it's fourth Doctor (Nerd speak), in 1994, a mere three years after Asperger's Syndrome was formerly introduced to the English Speaking Psychiatric world by Uta Frith. Never mind, the syndrome was named after it's original identifier, Han's Asperger in 1944. Unfortunately, he had the audacity to be Austrian, speak and publish in German right at the end of WWII. Who knows what other brilliant mind's work was ignored at the time. Miracle his work was found and researched.
From the early 1990's thousands of children, adults, families of deceased relatives have been able to put a face to the way these brains worked. Give it a name, accept it's not a fault and try to move on. Do you remember the awkward kid in school? I know you do. The one that talked odd, perhaps had monotone inflections, talked in a monologue about his or her personal fascination. They may have been non Athletic, bullied in the locker room or the changing room, maybe you egged it on. They just weren't 'normal.' If you say no, I see brown brimming in your eyeballs. I can say now, it's ok, you were a kid too. No one suggested you to lay off, step up or ask that kid to sit with you at lunch.
There is nothing as satisfying as having lived with a neurological or mood disorder all your life and finally it be explained as organic, developmental, not typical, but much more important, NOT YOUR FAULT! Once upon a time Mother's were blamed for their infant's autism, due to Refrigerator Mother's. They supposedly didn't hold or bond enough with their children. Please note it was the 1950's/60's and no one was calling out Refrigerator Father's.
The DSM V will be published officially in May next year (2013). From what I can gather, (remember it's a blog, not a news reel) all genetic connections to Autism shall also be dropped from the DSM. There's an argument on both sides here. I know in my son's self contained classroom, he is moderate Autistic, seeping into Asperger's; he also has significant challenges with a mood disorder and Adhd. Not at all uncommon. He has classmates with Rett's Syndrome, Fragile X and Tubular Sclerosis, yet all benefit from similar special education instruction. Come the advent of the DSM V those with genetic disorders lose all DSM notice and all other's are lumped under Autism Spectrum Disorder (ASD).
For two of my three special needs children they will qualify under the new DSM V. It's ok for them. My youngest likes to play with the edges of Asperger's and as she grows I could certainly see a burgeoning Aspie diagnoses. However, under the DSM V's guidelines most probably not, as Asperger's will be gone. Will she lose out? Will she do ok no matter what? How do I know, all I do know is another possible bridge, another future support has been erased for her. Where will our fringe children go when all the rope ladders have been cut? I would hope, they go to your children. Why? Because perhaps you have taught them that classmate that talked odd, perhaps had monotone inflection, talked in a monologue about his or her personal fascination, was not athletic, and bullied in the locker room or the changing room, was just different. Different is ok, it's more than ok! Oh and she'll do his math homework for fun ;-)
I think this is where I am expected to laud the acting ability of Dustin Hoffman in Rainman. Forgive me if I don't. It may be exquisitely acted, have a fantastic sophomoric dalliance with relating to a person with autism, but please people it is an extreme, so far to the fantastical edge of reality it really has no place in the muck and mire of Kanner's Autism, Asperger's Syndrome, Pervasive Developmental Delay, Pervasive Developmental Delay (NOS), Retts Syndrome, Fragile X and yes, ADHD.
See what I did there? I took the perfect isolation of a Hollywood reflection of what so much of the public still consider's Autism and just bombarded you with real diagnostic reality.
Many of my compadres in blogging crime have already written about the impending changes in the DSM (Diagnostic and Statistical Manuel of Mental Disorders). The DSM was envisioned just before the end of WWI. I can only assume the pervasiveness of Freud, Jung and the burgeoning of psychiatry as a legitimate field was finally permeating. Unfortunately it certainly didn't mean the new born DSM was all that helpful. Still, it was the only real starting point modern day psychiatry had in terms of cohesive understanding. If I were to dissect each DSM and it's tangents I'd be here for years, into two Phd's and you would all be long gone screaming into the wilderness.
What I do want to focus on is what happened between 1980 and today. The DSM III emerged the year the US boycotted the Olympics (just thought I'd throw that in there, well, because I can). Sometime around 1986 Homosexuality was removed from the DSM as a mental illness; perhaps that may give you an inkling as to the sludge still stuck to the moral and well being of these supposed objective specialists.
The DSM morphed into it's fourth Doctor (Nerd speak), in 1994, a mere three years after Asperger's Syndrome was formerly introduced to the English Speaking Psychiatric world by Uta Frith. Never mind, the syndrome was named after it's original identifier, Han's Asperger in 1944. Unfortunately, he had the audacity to be Austrian, speak and publish in German right at the end of WWII. Who knows what other brilliant mind's work was ignored at the time. Miracle his work was found and researched.
From the early 1990's thousands of children, adults, families of deceased relatives have been able to put a face to the way these brains worked. Give it a name, accept it's not a fault and try to move on. Do you remember the awkward kid in school? I know you do. The one that talked odd, perhaps had monotone inflections, talked in a monologue about his or her personal fascination. They may have been non Athletic, bullied in the locker room or the changing room, maybe you egged it on. They just weren't 'normal.' If you say no, I see brown brimming in your eyeballs. I can say now, it's ok, you were a kid too. No one suggested you to lay off, step up or ask that kid to sit with you at lunch.
There is nothing as satisfying as having lived with a neurological or mood disorder all your life and finally it be explained as organic, developmental, not typical, but much more important, NOT YOUR FAULT! Once upon a time Mother's were blamed for their infant's autism, due to Refrigerator Mother's. They supposedly didn't hold or bond enough with their children. Please note it was the 1950's/60's and no one was calling out Refrigerator Father's.
The DSM V will be published officially in May next year (2013). From what I can gather, (remember it's a blog, not a news reel) all genetic connections to Autism shall also be dropped from the DSM. There's an argument on both sides here. I know in my son's self contained classroom, he is moderate Autistic, seeping into Asperger's; he also has significant challenges with a mood disorder and Adhd. Not at all uncommon. He has classmates with Rett's Syndrome, Fragile X and Tubular Sclerosis, yet all benefit from similar special education instruction. Come the advent of the DSM V those with genetic disorders lose all DSM notice and all other's are lumped under Autism Spectrum Disorder (ASD).
For two of my three special needs children they will qualify under the new DSM V. It's ok for them. My youngest likes to play with the edges of Asperger's and as she grows I could certainly see a burgeoning Aspie diagnoses. However, under the DSM V's guidelines most probably not, as Asperger's will be gone. Will she lose out? Will she do ok no matter what? How do I know, all I do know is another possible bridge, another future support has been erased for her. Where will our fringe children go when all the rope ladders have been cut? I would hope, they go to your children. Why? Because perhaps you have taught them that classmate that talked odd, perhaps had monotone inflection, talked in a monologue about his or her personal fascination, was not athletic, and bullied in the locker room or the changing room, was just different. Different is ok, it's more than ok! Oh and she'll do his math homework for fun ;-)
Tuesday, May 22, 2012
Autism in the mirror
Jacob stormed through the door yesterday, stomped up the six steps to the living room, slumped in a heap on the sofa. His face was screwed up in frustrated annoyance. First words out of his mouth, "I'm tired of people who don't want to understand my autism!" As the parent, you have to think of the two worlds I inhabited at that moment. The one where I wanted to find the bastard that made my boy feel this way, and the one where I was doing a mental and emotional dance that Jacob was finally articulating his feelings with autism.
I learned several years ago to delve in with a plethora of questions only confuses and separates from the experience. I was folding laundry, looked nonplussed, "Oh yeah, did something happen?" My hands were folding, my mind was in an origami of worry and anticipation.
There is a boy on the school bus, he quizzed Jacob about his Autism. Said boy also shared his 'college' level reading level and his 'genius' with genetics. Of course my literal Autie heard this and swallowed it whole.
Nothing impresses Jacob more than an exceptional knowledge of Marvel Heroes, Pirates, Star Wars and what the actual term "Google" means, than a clever peer. I doubt this child was "clever" in the way Jacob perceived; however, I knew Jake needed to believe it.
Jacob went on to tell me how he tried to explain autism to this boy. He compared it to brains being wired differently, that it can not be outgrown and there are many people with Autism in their older years who still can not find a way to connect and fit in. Apparently College boy demanded "but you could TRY to be more normal." It was Jacob's response that stopped my folding. "Well, what is normal? No thanks I like my autism."
He burst through the door, angry, frustrated, perplexed and agitated, not because College boy judged him, but he wasn't willing to listen to him. Now who is the one enveloped with "the notion of morbid self absorbsion?"
I learned several years ago to delve in with a plethora of questions only confuses and separates from the experience. I was folding laundry, looked nonplussed, "Oh yeah, did something happen?" My hands were folding, my mind was in an origami of worry and anticipation.
There is a boy on the school bus, he quizzed Jacob about his Autism. Said boy also shared his 'college' level reading level and his 'genius' with genetics. Of course my literal Autie heard this and swallowed it whole.
Nothing impresses Jacob more than an exceptional knowledge of Marvel Heroes, Pirates, Star Wars and what the actual term "Google" means, than a clever peer. I doubt this child was "clever" in the way Jacob perceived; however, I knew Jake needed to believe it.
Jacob went on to tell me how he tried to explain autism to this boy. He compared it to brains being wired differently, that it can not be outgrown and there are many people with Autism in their older years who still can not find a way to connect and fit in. Apparently College boy demanded "but you could TRY to be more normal." It was Jacob's response that stopped my folding. "Well, what is normal? No thanks I like my autism."
He burst through the door, angry, frustrated, perplexed and agitated, not because College boy judged him, but he wasn't willing to listen to him. Now who is the one enveloped with "the notion of morbid self absorbsion?"
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