I read this book a long time ago, have I ever said? It was by .. Sue Miller, I think and I always think it was We are the Mulvaneys but it's not, but it's like that. It's about a family with three or four kids in Chicago and the couple gets divorced and their one son has autism. He is pretty non verbal and I remember the mom sings a song to him to the tune of Oh Danny Boy, called Oh Randall Boy. Anyways, he is 1970's autistic, you know, the dad wants him to go live in a home and the mom doesn't want him to. Eventually he goes and lives in a home and he gets hit by a car while on an outing and he dies.
So I always think about that book and that character and I always think I don't want Anthony to get HIT BY A CAR. I mean, it's crazy, of course, that that would happen to Anthony because it happened to some character in a book but it has stayed with me and I think about it all the time.
Lately I have been putting Felicity in some clothes of Anthony's and it's killing me. I was changing her into his outfit today and I was telling her it used to be Anthony's and I got all upset. I feel like he's gone, like I am grieving some baby who died or something and he is RIGHT HERE. It occurred to me today that I am grieving, and while I am not a person who buys into the whole 'where did my son go when the autism came and got him' type of thinking, I guess I am grieving the loss of how I thought it was all going to go.
We had such a great day yesterday, Anthony's speech therapist wrote and said he is moving to the next stage of PECS which is when he comes home with his book and we use it here so that's exciting. I mean, I was really excited! And then when I went to pick him up his therapist seemed sort of sad and she said that they had had a bad afternoon, that he was grabbing at her and yelling. Then he did the same thing to Mike and then me and I was so scared. He is strong and he is only SEVEN and ay yi yi, I do not want him to beat me up! I can't take it! I can barely take it when Felicity pinches me and that's by mistake.
I mean, I know he's not going to do that. Logically I know that it's just a phase, a bump. He is doing so great with these PECS, I mean, I think better than anyone anticipated. I'm sure that doesn't come without some behaviors, if I know Anthony.
Last night I was doing some google searches on autism and grabbing and I found this article about a teacher in Florida who got fired for grinding a shoe into an autistic child's face because he wasn't listening to her. Can you imagine? Mike and I were talking this week about how people who work at group homes are paid like barely over minimum wage and they are the ones taking care of people like Anthony. It makes him want to live forever, Mike said, and I agree.
So even though I try to take things one day at a time and sometimes one HOUR at a time and even though I am grateful to God that I have Anthony and that we all have Anthony, some days are very hard. And today is one of them.
Friday, October 19, 2012
Monday, October 08, 2012
Depressing
Well, this is a depressing article. Opinion piece? I don't know what to call it. I do know that I really don't like the Huffington Post, I don't even understand what they are exactly, but I do feel like they come down on the wrong side of autism, or at least autism the way I see it. They post a piece by Jenny McCarthy, talking about vaccines and autism, and then they post a piece about someone else saying that vaccines cause autism and decrying their theory. Then they post a piece like this and I - I don't even know what to think.
I mean, I could see how this woman feels so badly about her and her daughters' situation. I feel a lot of pressure in my life because I have four kids and they all have varying needs and of course, Anthony's needs are more special and more long-lasting, I guess, but man. If I thought this way, the way that this woman does, that 'autism sucks and then you die', I could not get out of bed in the morning. I mean, do I want to work on toilet training with my seven year old? Not really. Do I want to work on it with my 10, 18, 25 year old? Not a chance. But if it's what happens, it's what happens. What else can I do except be a parent to my child and do what they need?
This piece just seems so political. I mean, I guess that's the point of the author, right? She cherishes her firstborn, it says. Me too, I think! Yay! Another mom of a child with autism and we can be on the same page. Then she says that her firstborn is a child who was 'not born with autism' and I think what now? Who cares? I mean, I CARE. If Anthony wasn't born with autism and he caught it at his doctor's office or from his diet or something, of course I care. But I can't see it, and it's too much to get into why but I just disagree. And also, I think, who cares? What good does that do this woman, or her child, whom she cherishes?
I think about how fast lives can change. I'll tell you what, right now I am planning on giving my kids the tools that they need to get through their young lives. I am trying to teach them right from wrong, how to be nice, how to QUIET DOWN (Maria), how to walk, eat, sing, play, on and on and on, I am teaching them, I am parenting them. I am planning for Maria to start Kindergarten next year and Veronica the year after that. But who knows? What the hell do I know? If something ever GOD FORBID happened so that Maria couldn't start Kindergarten next year, I would have to adjust, right? I'd have to change my plans so that her needs could be accommodated. That's what parents do.
If you want to have a perfect child, I suggest you go to Target or the Drugstore and buy a nice frame and then just keep the picture that comes with it in there and have that kid in the picture be your child. Because that's the only way to get a perfect child! Human children are complicated, there are no guarantees that you are only going to be able to parent for 18 years and then you are free. Also, there are no guarantees that you will live forever! Why does this woman fret so much about how she has to be a parent forever, how no one will take care of her kids once she and her husband are dead? I mean, we could all go at any time. I feel like I am missing something, like this will all come back to get me, but I swear, even if it all turns around for us and Anthony turns into an aggressive person, and we are all miserable, I'm not going to be sorry that I once wasn't miserable. I'm not going to be sorry that I didn't blame the world and make up reasons why he got autism. I am going to take the life that I've been given, and take Anthony's life, that HE'S been given, and make the best of it.
I mean, I could see how this woman feels so badly about her and her daughters' situation. I feel a lot of pressure in my life because I have four kids and they all have varying needs and of course, Anthony's needs are more special and more long-lasting, I guess, but man. If I thought this way, the way that this woman does, that 'autism sucks and then you die', I could not get out of bed in the morning. I mean, do I want to work on toilet training with my seven year old? Not really. Do I want to work on it with my 10, 18, 25 year old? Not a chance. But if it's what happens, it's what happens. What else can I do except be a parent to my child and do what they need?
This piece just seems so political. I mean, I guess that's the point of the author, right? She cherishes her firstborn, it says. Me too, I think! Yay! Another mom of a child with autism and we can be on the same page. Then she says that her firstborn is a child who was 'not born with autism' and I think what now? Who cares? I mean, I CARE. If Anthony wasn't born with autism and he caught it at his doctor's office or from his diet or something, of course I care. But I can't see it, and it's too much to get into why but I just disagree. And also, I think, who cares? What good does that do this woman, or her child, whom she cherishes?
I think about how fast lives can change. I'll tell you what, right now I am planning on giving my kids the tools that they need to get through their young lives. I am trying to teach them right from wrong, how to be nice, how to QUIET DOWN (Maria), how to walk, eat, sing, play, on and on and on, I am teaching them, I am parenting them. I am planning for Maria to start Kindergarten next year and Veronica the year after that. But who knows? What the hell do I know? If something ever GOD FORBID happened so that Maria couldn't start Kindergarten next year, I would have to adjust, right? I'd have to change my plans so that her needs could be accommodated. That's what parents do.
If you want to have a perfect child, I suggest you go to Target or the Drugstore and buy a nice frame and then just keep the picture that comes with it in there and have that kid in the picture be your child. Because that's the only way to get a perfect child! Human children are complicated, there are no guarantees that you are only going to be able to parent for 18 years and then you are free. Also, there are no guarantees that you will live forever! Why does this woman fret so much about how she has to be a parent forever, how no one will take care of her kids once she and her husband are dead? I mean, we could all go at any time. I feel like I am missing something, like this will all come back to get me, but I swear, even if it all turns around for us and Anthony turns into an aggressive person, and we are all miserable, I'm not going to be sorry that I once wasn't miserable. I'm not going to be sorry that I didn't blame the world and make up reasons why he got autism. I am going to take the life that I've been given, and take Anthony's life, that HE'S been given, and make the best of it.
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