Sunday, March 28, 2010
One More Thing
This blog post is great, isn't it? It is being lauded on Twitter as an antidote to the mean lady posting, and it totally works for me. People can be really nice and kind, I suppose. I am hopeful that maybe if I am one of those people, maybe I will start meeting more of my own kind, ha! It does not come naturally to me, but I am working on it. :)
Admission
I was just reading this excellent post and thinking about a time, years ago, when I may have been a jerk to a kid with Autism. I may not have been, he could have just been a kid misbehaving in church, but he may have had Autism.
When I was about 19 or 20, my sister and I went to Mass at this church that we didn't really like, but that was in our town. It was kind of Folksy Massy Catholic, and that is not our thing. There was a family in front of us and this boy was playing with change, slapping quarters together, and his mom was not even paying attention. I leaned over, after what felt like a long time, and said "could you stop doing that? You are driving me crazy!". The mom, at the handshake of peace, said to me, "you know, I'm going to forgive you". I feel confident I said something like "big deal" or something as snotty.
I know! I know I was in church! It's awful, and I haven't thought of it in years. It recently came back to me, and I was gripped with fear that that boy had Autism. I'll never know, I hope he didn't, I hope he was just a bad kid whose mom wasn't paying attention. But he probably wasn't, and who cares if he was? I never should have said that. It never occurred to me, just the same as it probably doesn't occur to people that Anthony has Autism, that there is an explanation to his whacky behavior.
Anthony is super noisy. SUPER. NOISY. He is a bray-er. It's like instead of flapping his hands to stim, he's flapping his vocal chords. It's NOISY. He is upstairs right now, yelling away, when he should think about going to sleep. We don't take him to church, and haven't for years. The last time he was there was Maria's baptism, when he was 2.5, and he was pretty bad then.
He is less impulsive than he was 2 years ago, and I think maybe he could sit for a while and not dart out up the aisle, but he's so noisy. I take Veronica to church and I take her to the back when she is just babbling loudly, and he is like ten times as noisy! So, no church for him, yet. There's a woman whom I sit near in church who is always telling me I should bring ALL my kids to church. She's funny, one time she told me that people are going to think every time I have a new baby, I just get rid of the old one. I just don't want to get into it, though, because I know she'd feel bad if I said "my son has Autism and he's super noisy and I can't bring him". Plus I might cry when I said it, because sometimes I still cry when I say Anthony has Autism. Even though it's been two years! Sometimes I practice saying it first, when I know I'm going to have to.
Anyway. This woman, who wrote about the little girl who was so badly behaved, the girl who wanted to make her jam a pen in her eye, isn't really a bad person, I'm sure. I'm sure she's embarrassed and feels badly about what's happened. But I wish that she and people like her would just look alive, man. It is all over the news that a lot of kids have Autism now, more than ever before! Epidemic! Jenny McCarthy! Parenthood! They're everywhere! Even a jerkstore like I was would NOT have said anything to that child in church if it hadn't been 20 years ago. I hope, anyway.
When we were little and my brother was sick and would get stared at, I would always stare back at people, I would confront them and try and make them feel bad. Now, though, I don't want to make anyone feel bad for feeling bad about Anthony, or me as his mother. I just don't want it to happen. I don't want anyone to judge little Anthony, believe me, he would have NO idea that it was happening, but I still don't want it. We stay home a lot, but I think maybe it's more for me than for him.
When I was about 19 or 20, my sister and I went to Mass at this church that we didn't really like, but that was in our town. It was kind of Folksy Massy Catholic, and that is not our thing. There was a family in front of us and this boy was playing with change, slapping quarters together, and his mom was not even paying attention. I leaned over, after what felt like a long time, and said "could you stop doing that? You are driving me crazy!". The mom, at the handshake of peace, said to me, "you know, I'm going to forgive you". I feel confident I said something like "big deal" or something as snotty.
I know! I know I was in church! It's awful, and I haven't thought of it in years. It recently came back to me, and I was gripped with fear that that boy had Autism. I'll never know, I hope he didn't, I hope he was just a bad kid whose mom wasn't paying attention. But he probably wasn't, and who cares if he was? I never should have said that. It never occurred to me, just the same as it probably doesn't occur to people that Anthony has Autism, that there is an explanation to his whacky behavior.
Anthony is super noisy. SUPER. NOISY. He is a bray-er. It's like instead of flapping his hands to stim, he's flapping his vocal chords. It's NOISY. He is upstairs right now, yelling away, when he should think about going to sleep. We don't take him to church, and haven't for years. The last time he was there was Maria's baptism, when he was 2.5, and he was pretty bad then.
He is less impulsive than he was 2 years ago, and I think maybe he could sit for a while and not dart out up the aisle, but he's so noisy. I take Veronica to church and I take her to the back when she is just babbling loudly, and he is like ten times as noisy! So, no church for him, yet. There's a woman whom I sit near in church who is always telling me I should bring ALL my kids to church. She's funny, one time she told me that people are going to think every time I have a new baby, I just get rid of the old one. I just don't want to get into it, though, because I know she'd feel bad if I said "my son has Autism and he's super noisy and I can't bring him". Plus I might cry when I said it, because sometimes I still cry when I say Anthony has Autism. Even though it's been two years! Sometimes I practice saying it first, when I know I'm going to have to.
Anyway. This woman, who wrote about the little girl who was so badly behaved, the girl who wanted to make her jam a pen in her eye, isn't really a bad person, I'm sure. I'm sure she's embarrassed and feels badly about what's happened. But I wish that she and people like her would just look alive, man. It is all over the news that a lot of kids have Autism now, more than ever before! Epidemic! Jenny McCarthy! Parenthood! They're everywhere! Even a jerkstore like I was would NOT have said anything to that child in church if it hadn't been 20 years ago. I hope, anyway.
When we were little and my brother was sick and would get stared at, I would always stare back at people, I would confront them and try and make them feel bad. Now, though, I don't want to make anyone feel bad for feeling bad about Anthony, or me as his mother. I just don't want it to happen. I don't want anyone to judge little Anthony, believe me, he would have NO idea that it was happening, but I still don't want it. We stay home a lot, but I think maybe it's more for me than for him.
Tuesday, March 23, 2010
Fresh Hell
Anthony isn't toilet trained, he is not even close, actually. His developmental pediatrician told us that with sensory issues like he has, it will really be Anthony's choice when to start training. He said that Anthony won't model his behavior after ours. He'll be five in June and I am constantly on the lookout for signs that he is ready to start some kind of training. Since he's been in school, they have been working on a program with him and we do it too - he gets his own diaper (at school, we are lazy and just get it ourselves), has to pull up his own pants, throw away his diaper, just be more responsible for the whole thing.
Lately, Anthony has been taking off his diaper and it is driving me mad. Twice we've gone in in the morning and found him bare assed, and super wet. We have to strip his bed and get him cleaned up, which is bad enough, but I also FEEL bad, I feel bad that we are leaving him in there all night, all wet. So, I've started checking on him when I go to sleep and making sure that I don't see his pajama pants laying around. Last night he was up LATE, it was almost 10:00 when I went up and I checked on him and not only were his pajama pants on the floor, but so was his diaper, shredded into about a billion pieces. He was lying on his bed, with all those diaper remnants everywhere around him. I called Mike to help me and we brushed off his bed, swept the floor, got him re-dressed and said Good Night. "Good night", he answered. I said "I love you", and he said "I You" and that was that. I told him to leave his diaper on and he did.
I don't know if this means something. Is he ready to train? Should I have taken him in the bathroom and sat him on the toilet? I am reluctant to take him out of his room, since sometimes he thinks that means it's time to run all over the house. Maybe I should bring the potty chair in there when I go to check him?
Last weekend in church I saw a family with a bunch of kids, they were in the front row because they were having their baby baptized after Mass. I noticed their oldest was autistic, or at least that's what I figured. He was rocking and seemed pretty ticky, he seemed familiar. He got mad at one point in the Mass and the Dad was so, so nice with him. The kid kept STOMPING his foot and the dad just talked to him and calmed him. I noticed when the dad picked him up that the kid was still wearing diapers and I got so upset! I have no idea why, I don't care that Anthony isn't trained, he is working on a lot of things and that just isn't one of them right now. But man - I guess on some level it must bug me because BOY OH BOY was I upset. I couldn't stop crying, I made my sister cry, it was time for Communion, it was TOTALLY embarrassing. PLUS I felt like a jerk because that family was FINE, they seemed FINE. It was ME that I was crying for, which is completely selfish and not exactly how I try to be, especially in church! Sheesh!
Lately, Anthony has been taking off his diaper and it is driving me mad. Twice we've gone in in the morning and found him bare assed, and super wet. We have to strip his bed and get him cleaned up, which is bad enough, but I also FEEL bad, I feel bad that we are leaving him in there all night, all wet. So, I've started checking on him when I go to sleep and making sure that I don't see his pajama pants laying around. Last night he was up LATE, it was almost 10:00 when I went up and I checked on him and not only were his pajama pants on the floor, but so was his diaper, shredded into about a billion pieces. He was lying on his bed, with all those diaper remnants everywhere around him. I called Mike to help me and we brushed off his bed, swept the floor, got him re-dressed and said Good Night. "Good night", he answered. I said "I love you", and he said "I You" and that was that. I told him to leave his diaper on and he did.
I don't know if this means something. Is he ready to train? Should I have taken him in the bathroom and sat him on the toilet? I am reluctant to take him out of his room, since sometimes he thinks that means it's time to run all over the house. Maybe I should bring the potty chair in there when I go to check him?
Last weekend in church I saw a family with a bunch of kids, they were in the front row because they were having their baby baptized after Mass. I noticed their oldest was autistic, or at least that's what I figured. He was rocking and seemed pretty ticky, he seemed familiar. He got mad at one point in the Mass and the Dad was so, so nice with him. The kid kept STOMPING his foot and the dad just talked to him and calmed him. I noticed when the dad picked him up that the kid was still wearing diapers and I got so upset! I have no idea why, I don't care that Anthony isn't trained, he is working on a lot of things and that just isn't one of them right now. But man - I guess on some level it must bug me because BOY OH BOY was I upset. I couldn't stop crying, I made my sister cry, it was time for Communion, it was TOTALLY embarrassing. PLUS I felt like a jerk because that family was FINE, they seemed FINE. It was ME that I was crying for, which is completely selfish and not exactly how I try to be, especially in church! Sheesh!
Monday, March 15, 2010
Meeting
Tonight I'm going to a support group, meeting type thing, for parents of children with Autism. It's actually called Talking About a Cure for Autism, which ... I hope that's not all we talk about, because it seems fruitless to talk about a cure for autism at this point. I hope that we can talk about living with a child who has autism and how to best do that. I would love to talk to someone sometime who has had the same experiences as I have - not the same exact experiences, but close. So I hope that the name is not indicative of all that they do. I am looking forward to getting out.
There is an Autism Expo this weekend that I'd like to attend. Apparently, they have a play area for kids, so I think I'll take Anthony. I want to look into some ID type stuff for him, his school has a booth there, and I like the idea of taking him somewhere on the weekend where he can play and not be the only kid with autism there.
He has been taking his diaper off recently when he is dirty. We are hoping that this is indicative of his NOTICING that he has a diaper at all. Otherwise, it's just a pain. It comes upon me slowly, the realization that he has no pants or diaper on. He came walking up to me yesterday and I looked at him and said hi and then I thought, hmmm,, what is different about him? He had just pulled off his pants and diaper and left them in the living room. Sheesh.
He was very wound up last night in his room. I went up and told him to lie down but he RAN out of the room, I followed him to see what he was doing. He just went into the kitchen, then to the livingroom, then when I sat down, he jumped on me like usual, rubbing his belly on my back. So I took him back upstairs, carrying him, which was hard as he pulled onto every wall in between there and his room. Finally we went up and I said GOOD NIGHT and he said GOOD NIGHT. I said I LOVE YOU and he said I, I, I. Then I left and he seemed better. He didn't go to sleep but maybe Mike didn't say good night to him in just that way? Maybe he was used to me putting him to bed last week when Mike was gone? Maybe he just wanted to run around the house a little? I'm damned if I know.
There is an Autism Expo this weekend that I'd like to attend. Apparently, they have a play area for kids, so I think I'll take Anthony. I want to look into some ID type stuff for him, his school has a booth there, and I like the idea of taking him somewhere on the weekend where he can play and not be the only kid with autism there.
He has been taking his diaper off recently when he is dirty. We are hoping that this is indicative of his NOTICING that he has a diaper at all. Otherwise, it's just a pain. It comes upon me slowly, the realization that he has no pants or diaper on. He came walking up to me yesterday and I looked at him and said hi and then I thought, hmmm,, what is different about him? He had just pulled off his pants and diaper and left them in the living room. Sheesh.
He was very wound up last night in his room. I went up and told him to lie down but he RAN out of the room, I followed him to see what he was doing. He just went into the kitchen, then to the livingroom, then when I sat down, he jumped on me like usual, rubbing his belly on my back. So I took him back upstairs, carrying him, which was hard as he pulled onto every wall in between there and his room. Finally we went up and I said GOOD NIGHT and he said GOOD NIGHT. I said I LOVE YOU and he said I, I, I. Then I left and he seemed better. He didn't go to sleep but maybe Mike didn't say good night to him in just that way? Maybe he was used to me putting him to bed last week when Mike was gone? Maybe he just wanted to run around the house a little? I'm damned if I know.
Monday, March 1, 2010
Things You Have to Do
Things I have to do that I don't think other mothers, typical mothers, mothers of typical children have to do, probably.
PARENTHOOD
I watched the new show Parenthood today, which has a character who has Asperger's, he is diagnosed in the pilot. I cried and cried watching it. Our experience is different, because Anthony doesn't talk much and that was our first sign that he had autism, and he was 2.5 years old when we started him in therapy. This kid on the show is like ... ten? Eight? Because he talks, his parents don't really deal with his issues until he is a behavior problem in school. Some kids are being mean to him and he bites and attacks the boy that calls him a freak. Personally, I thought it was fair, but I might be biased. I read that one of the Producers of the show (I think, producer) has a son with Asperger's and I'm sure that's the reason that it's all treated so fairly, but I think a lot of it has to do with the fact that this actor is AMAZING. There is one scene where the boy leaves his cousin's grade school concert, and he is standing in the playground with his dad watching him, standing right in a puddle and his feet are soaked. I cried and cried watching the scene - partly because the dad is asking HIS dad for help, because "something is wrong with" his son, but mostly because Anthony likes to stand in water like that, too. It is a funky thing, being a mother to a child with autism. It sneaks up on me all the time - I think "my son has autism", and it blows my mind. It's like I forget every day. I hope I continue to forget, I want to always think of him as Anthony first, as my first boy, my baby, without thinking of him having autism first. I don't want to get so hung up on the fact that he has autism that that's all I think about.
- be the only one to go in and get their 4.5 year old in the morning. Anthony just slams the door on Mike when he goes to get him, usually. He loves Mike but he really likes when I go get him because he likes to
- rub his belly on my back. He is obsessive about it. He started it when I was pregnant with Maria so that's almost three years!
- carry their 4.5 year old.
- try and figure out what's wrong with their 4.5 year old, with no words to describe it.
- block the washer and dryer so that their 4.5 year old doesn't open the dryer door, climb up on the dryer, and get their (socked and shoed) feet into the water of the washer.
- wrap duct tape around the knives, so that their 4.5 year old can flip a knife in front of his face without hurting himself.
- Drive so freaking far to school.
- keep their 4.5 the hell out of the toilet.
- find their toothbrush every day, because their 4.5 year old has STOLEN it so he can whip it around in front of his face.
- listen to the incredible amount of noise coming from their 4.5 year old's bedroom before he goes to bed. I mean, it's NOISY. It sounds like ten men up there! Gymnasts!
PARENTHOOD
I watched the new show Parenthood today, which has a character who has Asperger's, he is diagnosed in the pilot. I cried and cried watching it. Our experience is different, because Anthony doesn't talk much and that was our first sign that he had autism, and he was 2.5 years old when we started him in therapy. This kid on the show is like ... ten? Eight? Because he talks, his parents don't really deal with his issues until he is a behavior problem in school. Some kids are being mean to him and he bites and attacks the boy that calls him a freak. Personally, I thought it was fair, but I might be biased. I read that one of the Producers of the show (I think, producer) has a son with Asperger's and I'm sure that's the reason that it's all treated so fairly, but I think a lot of it has to do with the fact that this actor is AMAZING. There is one scene where the boy leaves his cousin's grade school concert, and he is standing in the playground with his dad watching him, standing right in a puddle and his feet are soaked. I cried and cried watching the scene - partly because the dad is asking HIS dad for help, because "something is wrong with" his son, but mostly because Anthony likes to stand in water like that, too. It is a funky thing, being a mother to a child with autism. It sneaks up on me all the time - I think "my son has autism", and it blows my mind. It's like I forget every day. I hope I continue to forget, I want to always think of him as Anthony first, as my first boy, my baby, without thinking of him having autism first. I don't want to get so hung up on the fact that he has autism that that's all I think about.
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