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I have only seen one other parent of a child with a severe disability respond (I think we are mostly keeping our collective thoughts to ourselves, and getting yet another taste of how the world of "normals" perceives us, our kids and the appearance of our lives), but will throw in my two cents' worth.
Our lives are more difficult than you can imagine. We are depressed, emotionally exhausted, overworked, frustrated by the lack of resources that can provide the training, education, recreational opportunities, and transitions to adult life for our kids; we get stared at when we try to be part of the rest of the world (think your 2-year-old having a tantrum is embarrassing? Try having a raging 10-year-old in the Target, with the humiliation that attends attempting to remove said child, while being bruised and having your glasses broken on your own face). And, when you have a child who injures herself, as ours has done and occasionally still does, you get visits from child protective services and the police, and copious notes in doctor's files. Her medical and school records literally fill a 4-drawer filing cabinet. For 5 years, I read nothing that wasn't devoted to autism and speech pathology. We haven't been on a date in 2 years, and our sex life is nonexistant. Our older daughter is a wonderful sibling, and has to listen to the freakin' morons at church (which once meant something to me, but ceased to when we were asked to not bring our younger daughter there anymore because she disturbed the service) tell her that having a special needs sibling is a blessing, and that it's character-building (she has already told some old blue-haired bat that she has plenty of character, and that God can keep his blessings to himself, and leave her sister alone--I'm proud!).
This is what comprises our lives. Yet, I love my daughter, and fear the day that we won't be able to care for her anymore, either because of her health issues or our aging. I can't judge the parents, and my guess is they have had plenty of time to explore any other options they had, and they arrived at the one that worked for them. It wouldn't be my decision, but I'm not in the same situation.
Two other things: (1) please spell "retarded" correctly (it's not "retarted", and in an otherwise articulate response, it was glaring), and (2) the nickname thing--good Lord, we call our daughter our little mermaid, because she loves water and makes dolphin sounds instead of talking.
My prayers and thoughts to any other parents out there who have a child with one or more disabilities. Our lives are not like everyone else's, we don't get the same rewards as the vast majority of the other parents, yet we are expected to handle more and still remain saints, so that others can beam their little smiles that mean "thank God I'm not you!" and move on. I also think about those responders who don't have kids now, but may be so lucky later on--won't it come as a shock to you, should you have a child with problems that others don't understand, to recall what you wrote today?
