She told me that in order to perform the test my child would need to be able to point to an object and move it, under direction, from one location to another.
“Calvin can’t point, at least not without hand-over-hand assistance,” I told her, knowing full well that pointing is a foundation of language, “but he gestures for his sippy cup.” I went on to explain that Calvin isn’t capable of carrying an object under direction, only carries something if it's also in his mouth, like his sippy cup or a favorite toy that he likes to chew on. I told her that Calvin, who is eight, can’t speak, has little receptive communication and almost no expressive communication. He knows sign language for one single word—hug—though only signs it from his highchair. He utters “uh-uh,” which I think means “mama,” but only says that from his bed.
The psychologist said something like, “Well, then we will not be able to give Calvin the test since he is so significantly delayed.” Said test was to determine if Calvin is “intellectually disabled,” a new, apparently more politically correct term for “mentally retarded.” But even without the test, it's the undeniable, sorry truth that he is.
When Calvin was an infant-toddler, friends and family used to send or bring him toys. He received books and plush animals, puzzles, choo-choo trains, fire engines with bells, stacking blocks of all kinds, wind-up cars and bathtub toys. Upon receipt of these kind gifts I’d glance at Michael and half smile, though my heart winced. Calvin wasn’t interested in—or capable of—playing with any of them. Once our loved ones had a chance to spend some time with Calvin and witness his severe deficits they ultimately visited bearing toys such as rattles and knobby balls, light-up music-makers and the like. They watch my eyes water as I tear the pretty paper off of their gifts (Calvin can’t unwrap things either) and can clearly see my deep appreciation of their thoughtful choices.
Calvin still cannot drink from an open cup by himself or place his sippy cup right-side-up on the table. He can’t eat with a spoon or tie his shoes or put on his socks or button his shirt or pull up and zip his pants or use the toilet or walk without falling or ask for a snack or tell us he’s cold or hungry or carry a lunch box or put on his coat or brush his teeth or push a toy car or stack a few blocks or point at a doggy or run and play with a child. I don’t think I need a test to tell me that my son is intellectually disabled. What's more, no test can ever establish what is inside that sweet little auburn head of his that endlessly asks us for hugs.
“Calvin can’t point, at least not without hand-over-hand assistance,” I told her, knowing full well that pointing is a foundation of language, “but he gestures for his sippy cup.” I went on to explain that Calvin isn’t capable of carrying an object under direction, only carries something if it's also in his mouth, like his sippy cup or a favorite toy that he likes to chew on. I told her that Calvin, who is eight, can’t speak, has little receptive communication and almost no expressive communication. He knows sign language for one single word—hug—though only signs it from his highchair. He utters “uh-uh,” which I think means “mama,” but only says that from his bed.
The psychologist said something like, “Well, then we will not be able to give Calvin the test since he is so significantly delayed.” Said test was to determine if Calvin is “intellectually disabled,” a new, apparently more politically correct term for “mentally retarded.” But even without the test, it's the undeniable, sorry truth that he is.
When Calvin was an infant-toddler, friends and family used to send or bring him toys. He received books and plush animals, puzzles, choo-choo trains, fire engines with bells, stacking blocks of all kinds, wind-up cars and bathtub toys. Upon receipt of these kind gifts I’d glance at Michael and half smile, though my heart winced. Calvin wasn’t interested in—or capable of—playing with any of them. Once our loved ones had a chance to spend some time with Calvin and witness his severe deficits they ultimately visited bearing toys such as rattles and knobby balls, light-up music-makers and the like. They watch my eyes water as I tear the pretty paper off of their gifts (Calvin can’t unwrap things either) and can clearly see my deep appreciation of their thoughtful choices.
Calvin still cannot drink from an open cup by himself or place his sippy cup right-side-up on the table. He can’t eat with a spoon or tie his shoes or put on his socks or button his shirt or pull up and zip his pants or use the toilet or walk without falling or ask for a snack or tell us he’s cold or hungry or carry a lunch box or put on his coat or brush his teeth or push a toy car or stack a few blocks or point at a doggy or run and play with a child. I don’t think I need a test to tell me that my son is intellectually disabled. What's more, no test can ever establish what is inside that sweet little auburn head of his that endlessly asks us for hugs.
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| photo by Michael Kolster |
I wonder if Calvin knows far more than is apparent, as far as receptive communication. Sometimes, I wonder if Sophie knows everything or nothing at all.
ReplyDeletei find myself pondering that question daily. xo
ReplyDeleteDo take a look at this blog. I read it regularly--she does not post as often any more, but here advice and procedures are golden. She is a professional organizer/decorator, I believe and the way she handles the logsitics needed to make life with her son as enjoyable for both of them as possible, ever so well.
ReplyDeletehttp://dreammom.blogspot.com/
I came here from Elizabeth's blog. I have a twenty year old daughter who is also severely mentally handicapped. She can't talk either, although she is able to communicate with some sign language. I often wonder what things go through her head. So much of what you wrote resonated with me, I wrote a similar essay about my daughter many years ago.
ReplyDeleteMy daughter is my hard gift. I look forward to reading more of your writing. Sadly, I recently deleted my blog and have only just started writing again.
Take care. Deb