Four Years Ago

Marla Garr, Oct 26, 2001
Copyright 2001

I stood over his crib, my hand over my eyes. Shaking and scared, I leaned over to comfort him. He screamed as if my touch were burning him. I pulled back my hand and covered my mouth as I sobbed in fear.

I guess you would have had to been there.

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I have learned advocacy for Developmental Disabilities. In the advocacy, I have often said "its just not their kid". If it were their kid, they would just do what was right the first time. They would not make us parents fight for inclusion, for appropriate therapies, for appropriate placements.  They put the files away at Five pm, and go home to their waiting families and forget about the child that can't talk, but received no sessions today. Its just not their kid. They care 9-5. The very dedicated, stay longer, try harder, but still, in a 24 hour period, they too, can forget and go home leaving children, as my son, in their file drawer until tomorrow.  After all, its just not their kid.

Often, when I've been refused services for my son, or been belittled, or humbled, or left begging for some professionals time, is when I want to leave my son in their waiting room. Let THEM take him home tonight. Let them have him for a week. I'd leave a little note in his pocket that said "Thank you for caring for this child. I'll be back on Wednesday to help you." Maybe, after a week (or a day!), they would see what we parents live 24/7. Maybe they would understand why we need their help.

But maybe not.

Maybe:

.....they would have had to been told that "The Chinese don't refer out "true" special needs kids".

......heard "There's nothing wrong with the children that love and time won't fix"

.....they would have had to have been there when I looked into the eyes of a soul-less body and heard the words "The medical report says he's healthy"

.....they would have had to watch in horror as he coiled into fetal positions and left this world, and listen to others say "he'll be just fine".

.....they would have held the 17#, 16 month old newborn in their arms through the cruel public of his birth country. They would have had to cover his face, and turn their backs on strangers that would hurt him.

......they would have had to watch their families visions and hopes wash away at the Medical Exam area, as the "Doctor" looked at them with quizzical eyes when his legs wouldn't straighten from a lotus position. And then swallow their fear and they would nod, "its ok, yes, I still will take him home"

.....they would have had to say the prayers to keep him safe and alive until he could, at least once, be held by his Daddy, who had researched what we had to do if and when he died before then.

....listened as they held their unresponsive child for months, and were told "wait and see" by the adoption community and by the professional community and received *no* support.

...they would have had to been there thru the hours of surgery's, the days of phone calling, the hours of assessments, the moments of discovery, heard the words from professionals as they diagnosed him.

....and seen his first "wide smile", known the joy the first time he looked at you, seen his determination to stay part of this world, to live!  Held his hand as he experienced things for the first time, and found them
terrifying. Realized for themselves the building of trust and guidance and LOVE.

Then maybe the professionals that claim to want to help him, would. Maybe we parents, would not have to wonder when, or how, or what will happen to our children when we are dead and can no longer stand for them.  Maybe if they had experienced it, they would know the love and force behind our actions. Maybe they would not see us as *only* parents, but as what they claim to be, dedicated professionals and supportive communities.

Maybe if they had stood with me, as I stood over his crib, my hand over my eyes. Shaking and scared, leaning over to comfort him. Him screaming as if my touch were burning him. Pulling back my hand and covering my mouth as I sobbed in fear.

I guess they would just have to have been there, four years ago, to truly understand.


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