For years I have been certain that when parenting an autistic child -- or any for that matter -- one should not give up hope. It's too bad that the word "hope" can sometimes conjure up images of sugarymawkish sentimentbright-eyed kittens or teddy bears holding balloons. Because the truth ishope works. Hope is a really good thing and should not become sentimentalizedturned into a four-letter-word.
Today I read a friend's blogpost about her little boyand his IEP meeting. The nadir of the meeting was when she was told of her son's IQ testing and what it led to. You can probably guess. Without going further into thatand how I could relate to the sense of injustice elicited by our children's low IQ scoresI want to write about where this wonderful mom "K" went with this. The jumping-off point was the IQ/MR thingbut the important thing to me was what K forgot when she jumped.
The whole testing thing made her think about abilities"normal," and otherwise. K thought back to some commercialwhere a young boy comes home to an empty house and because he's hungryhe goes and makes himself some mac and cheese. He reads the directions on the boxexecutes them correctlyserves and then successfully feeds himself. K writes -- correctly -- about how this mundane set of tasks is actually a miracle. She says
"Do you know how amazing a feat all of that isfor a child to take the initiative to seek out something to eatread the instructions and follow them, seek out and find the proper utensils for preparation of said fooduse the microwave safely and correctlyand then eat the food without burning themselves or dropping the food? To just be able to use a fork? That commercial is a goddamned miracle. M just barely learned how to use a fork about 2 months ago. Just the motion of stabbing the food with the tines and ensuring you don't overload the fork is actually a very complex task that most people take for granted. M being able to carry out all the steps depicted in that commercial seems like something straight out of a science fiction novel to me."
K is absolutely correct here. Both the boy in the commercial and her own son have done miraculous things. K knows this.
I remember feeling this waytoo. Sometimes I still do. Itoohave watched commercialsbirthday partiessporting eventsloving interactions between mother and childand Itoo have come away thinking about how Nat is so different and so unableand yet I could also understand how amazing Nat's accomplishments were.
The thing isthere were also times like thissix years agowhere I had no hope that Nat would ever be able to master the next level or the next. It seemed like so many levels to rise to. It seemed like childhood -- that precious time in life where many inabilities are forgiven -- was too short a time for what he needed to learn.
Yesterday Nat came home and simply -- and miraculously -- asked meunpromptedfor a snack. Today Nat came into the kitchen and simply -- and miraculously -- made his own bagel. Yesthey were pre-sliced. YesI had briefly gone over his choices. Butat 20he now can -- pretty much -- take care of his own physical needs. He did learn how to cook simple meals for himself. Just asyears agoat lasthe did learn how to use a toilet. He learnedover time. He developedover time. No magicjust good ole education and perseverance. You decide how to pronounce the latter.
Nat's body and brain grew and developed. There has been no capping-off pointno closing-of-the-window. 0-3 means nothing when you are atypically wired. Just as we don't have to take to heart what the DSM 1-5 says about us or our kidswe don't have to take to heart the whole snapping of the elastic mind warnings. They are just guidelines. But the results have infinite variations.
I always thought I had so little time. Now I realize that Nat had time to developbut that now I have so little time to appreciate my boys as childrenfor who they are. I squandered so much time worrying about what they were not.
Today I read a friend's blogpost about her little boyand his IEP meeting. The nadir of the meeting was when she was told of her son's IQ testing and what it led to. You can probably guess. Without going further into thatand how I could relate to the sense of injustice elicited by our children's low IQ scoresI want to write about where this wonderful mom "K" went with this. The jumping-off point was the IQ/MR thingbut the important thing to me was what K forgot when she jumped.
The whole testing thing made her think about abilities"normal," and otherwise. K thought back to some commercialwhere a young boy comes home to an empty house and because he's hungryhe goes and makes himself some mac and cheese. He reads the directions on the boxexecutes them correctlyserves and then successfully feeds himself. K writes -- correctly -- about how this mundane set of tasks is actually a miracle. She says
K is absolutely correct here. Both the boy in the commercial and her own son have done miraculous things. K knows this.
I remember feeling this waytoo. Sometimes I still do. Itoohave watched commercialsbirthday partiessporting eventsloving interactions between mother and childand Itoo have come away thinking about how Nat is so different and so unableand yet I could also understand how amazing Nat's accomplishments were.
The thing isthere were also times like thissix years agowhere I had no hope that Nat would ever be able to master the next level or the next. It seemed like so many levels to rise to. It seemed like childhood -- that precious time in life where many inabilities are forgiven -- was too short a time for what he needed to learn.
Yesterday Nat came home and simply -- and miraculously -- asked meunpromptedfor a snack. Today Nat came into the kitchen and simply -- and miraculously -- made his own bagel. Yesthey were pre-sliced. YesI had briefly gone over his choices. Butat 20he now can -- pretty much -- take care of his own physical needs. He did learn how to cook simple meals for himself. Just asyears agoat lasthe did learn how to use a toilet. He learnedover time. He developedover time. No magicjust good ole education and perseverance. You decide how to pronounce the latter.
Nat's body and brain grew and developed. There has been no capping-off pointno closing-of-the-window. 0-3 means nothing when you are atypically wired. Just as we don't have to take to heart what the DSM 1-5 says about us or our kidswe don't have to take to heart the whole snapping of the elastic mind warnings. They are just guidelines. But the results have infinite variations.
I always thought I had so little time. Now I realize that Nat had time to developbut that now I have so little time to appreciate my boys as childrenfor who they are. I squandered so much time worrying about what they were not.