Happy New Year!

Here's my favorite picture from 2009, I guess. It's hard to decide! I would do better to do like my friend Hannah, month by month, but I have no time for that. Maybe later.

I'm sure Anthony has no resolutions, but I do, with regard to him. I pray for it every night when I am saying our prayers, but I hope that Anthony's mommy and daddy (I'm not being cute, this is just what I say in our prayers) can have all the patience and love that they need to get Anthony where he needs to go. We are thankful for his school and therapists and his family, all of whom love him so, so much. I am sometimes despondent over how our days go, but not our years. Anthony has come a long way in 2009 and I am bullish for the future.

Nice Lid

 
Anthony got that hat from Mike's mom, it's super cute.

Ol One Eye

 
So cute. It's only Tuesday and he is antsy already, I can tell. I have a cold and I don't want to go out but I might see if we can take a walk later or something, just to get out.

Together

 
This is from Mike's phone so the quality's not great, but she was hugging him and he was laughing so we had to get a record of it. It's hard, for Maria, Anthony doesn't want a lot to do with her but she tries. If she doesn't have a shirt on, of course, he wants to hug her just for the skin fix and she's always like "OK!". Poor stupid baby.

snow

 
 
He doesn't love it, necessarily. I think he likes it more than Maria, but that's not saying much. He was kind of antsy today, he woke up before 4:00 this morning (ugh), so I thought he'd want to go outside, but he wasn't out there long. I thought it looked so pretty but he won't wear gloves, and he doesn't like his hands to be so cold, even though he kept digging in the snow. Poor stupid baby. :)

Oh for Pete's Sake

 
cute! He had a good Christmas, I suppose. He just now quieted down and it's 9:30. He was good at my mom's and at one point wanted to go outside. I told him it was cold and rainy but he kept persisting. So I took him out to the garage and then we went outside, for just a few minutes. I finally said, come on Anthony it's cold. "Cold!", he said, going back in. "Cold!" I think he was maybe overwhelmed and I'm glad he was able to get me to figure out what he wanted. I hope by next Christmas he can say Merry Christmas! or Thank you! or Here's your present, Mommy. Ha!

This is an article that I read recently, the author is a mom whose blog I read. She has three kids, one of whom is autistic, and she is married to a government attorney, so I like her a lot, naturally. HA!

Anyways, she talks about Jim Carrey, the self-appointed "autism whisperer" who has no more career, I guess, so now he goes on Oprah with his girlfriend/whore to be seen by the masses. He tweeted, I guess, about how it's going to be impossible to have healthy kids if the autism rate keeps going up.

Anthony has many issues, but honest to God, it has never occurred to me that he is unhealthy! He is very healthy, I'd say. He's had one ear infection in his life, he had had a lot of colds and stuff since he started school but man. He is not unhealthy. And it blows my mind that Jim Carrey, who is supposed to be an ADVOCATE for people with autism, would imply that just because someone is autistic, they are unhealthy. When he implies things like that about people with autism, I think people are likely to believe him, because a) he's a celebrity and b) he supposedly cares so much about autistic people. This is dangerous because if more people believe that people with autism are 'unhealthy', they might not want to be around the autistic person, maybe they think they'll catch it or something. It's the same as that stupid Jenny McCarthy - I saw her on Oprah one time talking to a mom who had BOTH HER ARMS REMOVED - JM told the woman that she knew how she felt, not being able to hug her child, because autistic kids don't like physical contact. Sigh. I'm sure she meant to say SOME autistic kids or maybe just SOME KIDS, but she didn't. Jerks.

It is hard enough to care for our kids with autism, especially (I daresay) for our kids who can't talk, to literally have to be their voice, without having to combat these IDIOTS who are using autism as their cause to get themselves noticed. IF Jenny McCarthy's son has autism, and I say if because I believe she says now that he is cured, but if he does, why doesn't she just mind her beeswax and her own child? Why make it so hard on the rest of us?

Loony Bin

This weekend, like every weekend, Anthony wants to rub his belly all over my back. At his party yesterday, I had to be careful every time I got down on the floor (which can be often, I am sometimes getting Maria or Veronica), because he whips my shirt up. At home, obviously, I don't mind as much as I do out in public, but it's challenging anyway. Sometimes by the afternoon, my back is HOT with hives, I can't stand it. I also don't like that he'll whip up my shirt, rub against me, and then leave me there with my shirt up! He doesn't even have the decency, I tell him, to pull down my shirt, what the hell? Laura was over today and we were laughing - Mike said maybe I should just wear a bathing suit around the house and that way Anthony wouldn't have to pull up my shirt. I said sure, a bathing suit, combined with the shower cap that I should wear so Veronica can't pull my hair, that says sanity to me! Good God.

Watching Santa

 

Party

 
Here's Anthony, sitting in the kitchen at school during his holiday party yesterday. His therapists mentioned it must be nice for him to have a cookie or whatever without having to say "want" 1000 times first. He saw Santa Claus and seemed happy to see him, and he pulled his (real) beard, but he had no interest in sitting on his lap or having his picture taken. One of the directors of his school said, we have to keep trying!, and I thought the hell? I thought it was a very successful first visit with an old, semi-creepy man in a red suit. :)

Pizza

 
He really likes pizza and he's eaten so much this weekend. Some days he just can't get enough food and other days, he won't touch the stuff.

4.5

 
Did I say he was four and a half this week? I may have. I am tired, God knows what I've said or just thought. Last night I went out with some friends and I called Mike on my way home, around 10:45. He told me the only person who was sleeping well was Anthony! Ha! We should know we're in trouble if Anthony is the only one sleeping well. He goes to school all this week and then next week, just Monday through Wednesday, I think. He is not very excited for Christmas, but maybe next year. I feel like I say that a lot but it's possible, right? I hope so.

One year and one day ago

 
Anthony is at school, but I just read this sad outcome to a story of a missing autistic boy and I wanted to post it. That poor baby and his poor family! I got to the last part, where they said they were calling out "pizza" and the dog's name, to try and find the boy. Then I started thinking how we would probably do something like that, and then I really started to lose it. I think we should all say a prayer for this little boy and his family.

sunday

 
They used to look so much alike, and they really don't anymore, do they? Oh, Anthony, what kind of day we've had with you!

He woke up around 3:00, for the day and he never took a nap. I put him to bed and he wouldn't even go to sleep, he was so charged up. I just said good night and he banged around in there for a while, but is asleep now. Now I am just hoping he sleeps all night. He is so, so, SO loud and noisy, it's hard to believe. I wish there was a way to tone it down, just a bit, but there's not. He has to get out whatever he has to get out. I get really freaked out sometimes because I think how will we ever be able to take him anywhere? How will he ever go to church with us? But it's stupid to worry about, maybe some day he'll just stop in the same way he just started. Maybe.

Tuesday

 
Back to his old school today again. It's going well. His OT said he was 'placid', but she also said he smiled, so I guess that's good. Mike was home today because Veronica has been sick so that was nice. I am ground down to the bone so I can't say anything else. Happy Tuesday!

Floating

 
Doesn't it look like he's floating here?

Thanksgiving

 
Of course we are thankful for Anthony. Tonight we were downstairs before he went up for his bath and I said "I love you" and he said "I You", which is his version of it, so that was sweet. He loves to climb up on my chair when I am holding the baby and rub against my back, but I am trying to make him ask for it, but I don't know what to call it. Today he was pawing at me and I said "what do you want?" and he seemed confused - I mean, I think he would have said it but he really has no word for it. So I said "Mommy?" and he said, pleased, "Mommy!". It was super sweet. I am thankful for the insurance mandate in Indiana and I am thankful for his school and therapists. I am thankful for his sisters and I am thankful for his father. I am thankful for his grandparents and his aunts and uncles (and really mostly for his Aunt Laura, who comes over regularly even though it is insane here and we eat every meal in like six minutes or less). I am thankful for the dips and turns in his life. Right now he is going through kind of a hard time - well, it's hard for me. He seems a little bit removed from me - he is not making much eye contact and seems, for the most part, to prefer to spend time alone. As I said, they say how he is using all these two word phrases at school and he's not doing it so much at home. I am impatient, and I am grateful that he has days, even when he is not at his best, that he will say "Mommy" and "I You". Because I him too. :)

Well, duh

This would have to go into the 'no sh*t" category, as far as I'm concerned.

It is never hard to parent Anthony, it is never hard to be his mother. It's harder to be Maria's mother, I swear! It is the easiest thing in the world for me to love him. But it is hard to be the person that cares for Anthony and is his only voice in the world, long past when a mother of a typical child would need a voice. It is hard to have your heart broken daily when you see another, younger child, speaking and communicating and most of all, enjoying their normal life, and wonder if Anthony will ever have that. It is hard to not know when Anthony's next freakout is going to come and worse, it is hard to not know how to help him. It is hard to have him look me in the face and say "oweee" and not know what hurts, or if it is even in a place where I can reach it to kiss it and make it better. It is hard to feel so helpless when you are supposed to be the one that can help, that can make it better.

When I was little, my brother Larry got sick and I know that it was very hard on my parents and other adults in my family, because they didn't know what was wrong with him for a long time. They didn't know if he would survive it, or if we would all get it, or what. I feel bad even worrying about my problems with Anthony when there are people with bigger problems, MUCH bigger problems. But I do sometimes feel vindicated when I read a study like this, because at least it means that someone knows what we are going through, and what we are all trying to do for our kids.

Preschool

 
Today was a preschool day, so he's in his uniform clothes. It's going well, Mike takes him and picks him up because it's hard for me to get out with both girls. Today they were both sleeping when Mike got home. Anyways, it's still warm enough to play outside so that's what we were doing.

Lollipop

 
That is NOT a lollipop that I gave him, which means that it's one that he found in the yard. There goes that Mother of the Year award.

He is doing well, he had a "four" day in school today. They said he is using more two word phrases but I don't believe it. I mean, I do, but he's not doing it so much at home. He's back to his morning preschool tomorrow.

Saturday

 
He has been a little fretful today, we had major issues this morning because the Wiggles DVD kept skipping. But he's having a better afternoon. He's also been sleeping well, but I'm not going to mention it.

Five!

 
 
Anthony got a '5' this morning in school, which is for the best day ever. Mike said he seemed very happy to be back there this morning. Wouldn't it be nice if he did well at his preschool and therapies there and if they added to his ABA therapy? Wouldn't that be something?

Sweet Anthony

 
He woke up early, we don't know who woke up whom, but they were both pretty noisy by about 5:00. Hopefully he'll go back to school tomorrow. I think he's just tired and not sick, he ate a good lunch. We'll have to see how tonight goes!

Thursday

 
Now he can go back to school on Monday. Sigh. It's been very frustrating, dealing with his school. But I suppose this is how it is, right? I know all my friends whose kids are in school or daycare or whatever have to deal with some kind of nonsense or another. I have to say, it doesn't really make me feel like a Mother Warrior, like that jackass Jenny McCarthy would have you believe. It just makes me feel like a mother. I told Mike the other day, after Anthony's IEP, those meetings are depressing because no one in them really cares about Anthony except me. I'm sure that in their own way, those bureaucrats care about Anthony, but no one believes in just Anthony, no one believes that some day he'll be able to go to a regular school, no one believes that he'll be okay except me, in those meetings. But I'm the only one in those meetings whose job it is to believe it, I suppose.

Anyway, he's mostly better. He hasn't had a fever for two days, but he is still a little puny, so I think we probably wouldn't have sent him in today, anyway.

One Year Ago Today

 
...annoyed by Maria. Same as today! Ha!

He's sick, and he looks wan and pale, so I'm not taking a picture of him today. That stupid school of his has started a new policy, so because he had a fever this morning, he can't go back until NEXT WEDNESDAY. I am beyond steamed, I had a long conversation with the director who made this policy this morning. She's very nice, but it's a STUPID idea. I told her she is throwing out the baby with the bathwater, and the baby is AUTISTIC and likes a ROUTINE. GRRRR. I am MAD, hence all the CAPS. He's doing better, though, and Mike is home tomorrow, so there's that. And isn't he cute?

Head

 
Oh, Anthony. He's outside here, in his railroad train pajamas from Halloween. It was super gorgeous here today, they were outside quite a bit. I think maybe he's hitting his head less? He seemed kind of fever-y this afternoon, but he took some Tylenol (thank GOD he is taking it again) and perked up before bed. I will have to keep an eye on him tomorrow. Today is sweet Mike's birthday and he spent it with these children - he took Anthony and Maria for a walk or two, and gave Anthony his bath and bedtime routine like usual. I tried to get Anthony to tell him Happy Birthday, but no dice. Maybe next year!

Snack

 
BOY is he hungry when he comes home from school! He's been eating well at school, too, and he has a snack at 2:30, but I think he likes to eat with abandon here at home. He loves to carry around the big giant thing of pretzels that I get at Costco, and he loves to snatch them away from Maria. He will share with Mike or me, but not her. She's a pain, too, though, so I don't blame him. She only wants things that he has. She does love him, though. She gave him a big kiss tonight when he was lying on the floor so I could change his diaper. "Muah!" she says. Later, Mike asked her if she wanted to go downstairs (he usually takes them both down there so the baby can nurse and be settled down) and she went over to Anthony, right away - "Downstairs? Downstairs?" He went, but not with her.

He is going to start going to his old preschool one day a week, starting the week after next. He's going to get occupational and speech therapy there, so we decided that it would be best if he went from a classroom setting, instead of just dropping him off for therapy. Then he'll be home with us one afternoon a week. We'll see how it goes. I think it will be okay, even though his ABA people seem unsure about it. We're not married to it, either way. If it seems to not be working well for him, we'll stop. The possibilities are truly endless, we could do ABA at home, if we needed to, although I'd rather not. Hopefully it will just work out, we'll see. He is doing very, very well. Monday I went to get him and, with some prompting, he said "Hi! Hi Mommy!" So that's promising.

Walk?

 
Mike and Anthony, going for a walk. He had a pretty good week, even though he was up every damned night. It can be very upsetting to listen to him in there. I try to ignore it and even if I listen, he does sound like he's enjoying himself, most of the time, but man. It's difficult. I worry about what will happen when we put Vernoica in with Maria, what if she can't sleep through that noise? But it's stupid to worry, I'm sure it will all change up here soon. We are going to school Halloween party today, it will be our first social outing with Anthony's schoolmates. I'm looking forward to it and I don't have that normal feeling of dread when we go somewhere, because all the kids will be autistic, all the parents will be parents of an autistic child, and I won't have to worry about Anthony seeming so different. Because he won't be!