A mother's musings
For the past few months, we've devoted many hours to driving to and from Cincinnati Children's Hospital so that my sweet-natured, clever, adorable 4 year old daughter could be tested in various ways by total strangers.
The end result is that the medical establishment cannot agree on her mental acuity or the moniker to hang on her. One says "autistic!" Another says "No, but definitely on the spectrum! A heavy hand is needed!" And a third says, "your daughter is perfectly normal. She'll catch up to her peers socially in a few years. Try lots of speech therapy in the meantime."
All comment on her eager desire to learn and to communicate, her strong eye contact, her (apparently astounding to others) ability to read on her own and label everything under the sun, her frequent laughter and wonderfully winning ways.
Now we turn our attention to my precious 2 year old daughter, who hopefully will undergo surgery soon so that her little kidneys function at full capacity and her body can begin a path toward normalcy in appearance as currently her ribs are growing wider apart than necessary. Due to her current vocabulary (which seems to consist solely of "Bop!") we've been informed that she gets the honor of the same testing and potential labeling. Eye contact is strong, mental ability amply displayed, happy infectious laughter and physical contact frequent, but the speech delay dooms her to countless more hours in the car and playing with strangers in cold rooms.
My loving, protective husband takes each and every visit, every word from the mouth of every specialist and therapist, as gospel truth and looks for the harshest possible outcome -- probably to protect himself. However, this leads to him working a lot of overtime in anticipation of yet more medical bills, which in turn leads to his limited patience and inability to model self-control when angry.
Of course, his anger is short-lived, but each outburst leaves an indelible impression. I spend weeks re-teaching myself not to walk on eggshells, and occasionally over-compensate in his absence by trying to impose military-type obedience on very small children.
This leaves my girls, bright, sweet and wonderful as they are, the ultimate losers. Like all children, they change and grow every day, in large part influenced directly by us. Aria loses her temper much like her daddy does, and like her daddy despises restraint of any sort when deeply upset. Caoimhe mimics her sister and already claps her hands in anger when protesting. Putting Jesse next to his mini-me when both are in meltdown mode is never a good situation.
I have to wonder how much negative energy is being expended due to our early inattention (reading to ourselves instead of speaking to our babies,) and the quality of our water and air (the bathroom sink routinely disperses foul-smelling and tasting water, and I regularly bike to work with a t-shirt thickly folded and wrapped around my nose and mouth or I get sick).
How much is really autism? Do we as a society even have a clue what the parameters for autism are? We're perpetually searching for all the pieces of the puzzle but is it possible we're looking at pieces from dozens of different puzzles and proclaiming in ignorance that they all belong to one puzzle picture?
Does every child with a speech delay automatically fall into the autism spectrum once basic environmental concerns (i.e. is home life happy, do people talk and read to one another, is the child left to wallow in its own feces...) are removed? Does every shy child fall into the spectrum now? What about those who just aren't comfortable in doctor offices? Does my life-long shyness and insecurity make me autistic?
I guess what I'm asking is whether by simply accepting children as they were 20 years ago we did them harm; whether today's wide-ranging diagnoses are accurate or reflect another fad in the field of medicine and psychology? Is it helpful or harmful to lump so much of the population under a single canopy? Where has this diagnosis been for the history of man?
Looking back, one can find reference to nearly every malady under the sun by different names throughout our history. Autism and autism spectrum disorder seem to be somewhat new. I have to wonder how much of this disorder is due to environmental concerns...what we eat, what we imbibe, what we inhale, with heavy pollutants in our post-industrial age, and how it affects both a developing zygote and a small child working on building an immune system.
The randomness of my thoughts notwithstanding, it hurts that my children have to prove themselves time and again to an ever-rotating cast of doctors and therapists--and occasionally even to their own parents. And that the very strength and individuality which allows them to handle such treatment with so much aplomb can be translated into so much frustration and rage is just heart-breaking to me.
The end result is that the medical establishment cannot agree on her mental acuity or the moniker to hang on her. One says "autistic!" Another says "No, but definitely on the spectrum! A heavy hand is needed!" And a third says, "your daughter is perfectly normal. She'll catch up to her peers socially in a few years. Try lots of speech therapy in the meantime."
All comment on her eager desire to learn and to communicate, her strong eye contact, her (apparently astounding to others) ability to read on her own and label everything under the sun, her frequent laughter and wonderfully winning ways.
Now we turn our attention to my precious 2 year old daughter, who hopefully will undergo surgery soon so that her little kidneys function at full capacity and her body can begin a path toward normalcy in appearance as currently her ribs are growing wider apart than necessary. Due to her current vocabulary (which seems to consist solely of "Bop!") we've been informed that she gets the honor of the same testing and potential labeling. Eye contact is strong, mental ability amply displayed, happy infectious laughter and physical contact frequent, but the speech delay dooms her to countless more hours in the car and playing with strangers in cold rooms.
My loving, protective husband takes each and every visit, every word from the mouth of every specialist and therapist, as gospel truth and looks for the harshest possible outcome -- probably to protect himself. However, this leads to him working a lot of overtime in anticipation of yet more medical bills, which in turn leads to his limited patience and inability to model self-control when angry.
Of course, his anger is short-lived, but each outburst leaves an indelible impression. I spend weeks re-teaching myself not to walk on eggshells, and occasionally over-compensate in his absence by trying to impose military-type obedience on very small children.
This leaves my girls, bright, sweet and wonderful as they are, the ultimate losers. Like all children, they change and grow every day, in large part influenced directly by us. Aria loses her temper much like her daddy does, and like her daddy despises restraint of any sort when deeply upset. Caoimhe mimics her sister and already claps her hands in anger when protesting. Putting Jesse next to his mini-me when both are in meltdown mode is never a good situation.
I have to wonder how much negative energy is being expended due to our early inattention (reading to ourselves instead of speaking to our babies,) and the quality of our water and air (the bathroom sink routinely disperses foul-smelling and tasting water, and I regularly bike to work with a t-shirt thickly folded and wrapped around my nose and mouth or I get sick).
How much is really autism? Do we as a society even have a clue what the parameters for autism are? We're perpetually searching for all the pieces of the puzzle but is it possible we're looking at pieces from dozens of different puzzles and proclaiming in ignorance that they all belong to one puzzle picture?
Does every child with a speech delay automatically fall into the autism spectrum once basic environmental concerns (i.e. is home life happy, do people talk and read to one another, is the child left to wallow in its own feces...) are removed? Does every shy child fall into the spectrum now? What about those who just aren't comfortable in doctor offices? Does my life-long shyness and insecurity make me autistic?
I guess what I'm asking is whether by simply accepting children as they were 20 years ago we did them harm; whether today's wide-ranging diagnoses are accurate or reflect another fad in the field of medicine and psychology? Is it helpful or harmful to lump so much of the population under a single canopy? Where has this diagnosis been for the history of man?
Looking back, one can find reference to nearly every malady under the sun by different names throughout our history. Autism and autism spectrum disorder seem to be somewhat new. I have to wonder how much of this disorder is due to environmental concerns...what we eat, what we imbibe, what we inhale, with heavy pollutants in our post-industrial age, and how it affects both a developing zygote and a small child working on building an immune system.
The randomness of my thoughts notwithstanding, it hurts that my children have to prove themselves time and again to an ever-rotating cast of doctors and therapists--and occasionally even to their own parents. And that the very strength and individuality which allows them to handle such treatment with so much aplomb can be translated into so much frustration and rage is just heart-breaking to me.
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