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Friday, October 17, 2008

To Walk in My Shoes...

We all travel the proverbial road of life, yet none walk the same path.
We each reach out from the moment of birth for a hand to comfort, arms to warm and words to enlighten. Not only do we not know the path that lies before us, but neither does our parent/s.
Our world could be one of riches or one of poverty, it could be one of bedtime stories or one of night terrors. Our lives could be sending us into laughter, tears, love or hate, but one thing for certain is ALL of these things are not predictable nor are they prejudice. They do not care who our parents know, who our god is or our race.
There are many things that cross the lines of LIFE and no matter how we begin our paths are not stone, they wind, they twist and they change. A wealthy man can become poor, a child adored can become a woman of rage, a hungry infant can become the head of an empire, our beginnings do not dictate nor predict the choices we one day make.
Our choices in life certainly can change the direction of the road before us. Getting an education, not misplacing our anger, reaching higher than where we stand.
But other things in this life are equally unpredictable and certainly change the path in which you walk. Yet, we all must remember that even as we walk this life, we do not do so alone. We can at any given moment look around us and find others beside us. Certainly there are those moments in which it is hardest to see, moments when we are certain we are alone. And yet as we walk among many no two people walk the same path.
So why am I giving you all this philosophical explanation of life, our choices and roads we travel?
Sarah Palin!
yep! the moronic VP candidate for the right wing of government!
She has suddenly decided that SHE KNOWS ME. She not only knows what its like to be 'Joe Six-Pack', 'Joe-Plumber' and 'Hockey Mom Extraordinaire' but now she claims she knows what its like to be 'Jo-Momma' too!
Somehow between making more than $175,000 last year, firing those that didn't agree with her, having 5 children and a husband who worked 'sometimes' she decided that simply having a child with special needs has crowned her as the 'all knowing' of 'all things'.
I am sick of turning on my television and hearing the air waves scream with her claims of being the newly found ADVOCATE, the long awaited Prophet for all things SPECIAL NEEDS!!
Her child, Trig, is in fact 'special needs'; however he is ONLY 5 months old! Now don't get me wrong, its not that I lack compassion, or knowledge. Many special needs children in fact do have lots of issues, trials & tribulations in a short five months after they enter our world. But Sarah Palin's son has not suffered the heart abnormality, which can be common in Down Syndrome, (which is greatly fortunate and we celebrate with him) nor has he suffered any other unfortunate malady's of his delicate situation.
Trig is a healthy, adorable smiling boy!
Palin has NO clue what the road is like ahead of her or him. She has no idea the hell others have lived or the unpaved roads which have been plowed by the not so 'ordinary' parent.
She does NOT know the fatigue which can plague an entire family when a child doesn't sleep for days and days, nor does she know the path of worn carpet at the local pediatric ward or NICU. She has never touched the fevered brow of a child in Status Epilepticus or touched the cold hands of a child as it struggled to breathe. She has never spent a single day rising with no sleep to drive her child to the pediatrician, to the physical therapist, to the neurologist or to the geneticist all in the same day!
She hasn't spent her days on the phone with teachers, superintendents, parent advocates and the speech language guy just to get an IEP that includes communication. Sarah Palin has never sat in a group of supposed experts and heard her child discussed as though they had no name. She has not found herself searching the realm of her vocabulary to explain to the other child at the playground why her child didn't mean it nor could he help it. She hasn't had to desperately search the eyes of another parent and beg for understanding.
Sarah Palin HAS NO CLUE!
She doesn't begin each day cleaning carpets at 3am because her 9 year old took his diaper off to 'play', she doesn't spend her time in the grocery store reading every label to ensure there are no signs of gluten, dairy, wheat, soy, msg or red dye #40! She doesn't sit at the playground watching other children and choke back the tears as she struggles to accept her child's differences.
Sarah Palin has never sat in a restaurant and watched her child finger feed herself spaghetti at the age of 7 nor has she ever searched the internet relentlessly for a spoon her child could hold. She has never struggled with a wheel chair in a door way not accessible, she has never dealt with the stares while shopping with her 5 year old in the basket or the head shaking from passersby as her 12 year old has a melt down.
Sarah Palin does NOT advocate for me! She does not walk in my shoes nor does she know the scenery of the path that I travel. She is merely just begun to find her way. It will be years before she will be expected to know every acronyms meaning or every therapies purpose.
When Miss Alaska can recite to me the meanings and purposes of the IDEA, IEP, OT, PT, SLP, ABA, AT, AFO, OAP, ISP, DOJ, and the ADA I will listen. When she can explain to me myoclonic, petit mal, aspergers, spectrum, genotype, phenotype, mutation, mosaic, FSH, karyotype, methylation, EEG, MRI, CT, PET, EKG, ECHO, board maker, dynovox, mac button, g tube, j tube, kenogetic, casein and failure to thrive I might lend an ear. When Sarah Palin can stop looking at Russia long enough to share with me the difference between Hatchbacks and court shoes, platemates and dinner plates, switch plates and power buttons, weighted vests and t-shirts, shirt protectors and bibs, chux and sheets, Vails and cribs, melatonex and melatonin, pecs and pictures, signs and gestures, placement and a microboard, legal incompetence and self-determination then I might actually pay attention.
So while Sarah Palin may in fact speak to the masses about how she is now one of them, she doesn't even know what that means!
Now before anyone starts attacking me, there is not a single thing I listed here that I cannot explain, and no I won't have to first google it. I know all of these thing because I am a parent of a child with a disability, and unlike Govenor Palin I am not going to say I WALK IN YOUR SHOES, because I know that I don't.
I only know what its like to have a child with Angelman Syndrome, I know what its like to have a child with a seizure disorder, a sleep disorder and severely developmentally delayed. I don't pretend to know what a parent of an autistic child faces each day, nor do I claim I walk the road of a Down Syndrome parent. But I have been a parent of a child with multiple challenges for 19 years and counting :)
oh there are many roads in this world......they all have potholes, they all have detours ...but no two are the same.....and its time someone told that to Palin!!

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