Dreamy

 
Isn't he so cute? He just got his waffle this morning, after sleeping LATE (well, 9:00. That's half the day to his sisters) and cuddled up on the couch. He had a hell of a hard time last night but fell asleep around 11:00 and then slept all night. Things are better since we are putting that tape around his pajamas but they are still not great.

I said to Mike last night, you know some day a week is going to go by and he's not going to have any tantrums. I said, one day we'll be putting them to bed and we'll realize he didn't have one and then the days will just start to add up and he'll not have them so much! I said he's not going to be a 15 year old, in that room, throwing himself to the ground. I am hoping and praying this is true. I can't imagine the relief that we'll feel when we are not waiting for those meltdowns so much. We are getting very tense and sad as people, so I hope it doesn't last too much longer. It's already affecting my looks - I always tell people I feel like if you looked at a picture of me today and of one four years ago, it would be like looking at a President before and after he served. A president who went to WAR or something, ha!

Happy Thanksgiving!

They all looked so cute today but now everyone has pooped and peed on everything so-no pictures! But of course, I am very thankful for Anthony. I'm thankful for Little Star. I'm thankful for Mike. I'm thankful for Maria, who loves Anthony so much and is going to be his fiercest friend, I bet. I'm thankful for Veronica, who is so loving and sweet and cuddly when no one else is. I'm thankful for Anthony's therapists and teachers, past and present. I am thankful that somehow, even when we have a crappy day or night, we are able to look ahead to the future, which we know is bright. Happy Thanksgiving!

Tuesday

I read the saddest thing on the internet this week. I follow a lot of autism moms on Twitter and someone linked to a blog that said "11 year old autistic boy speaks!" and I read it. But it was such a setup. The mom said that her family was at a big holiday celebration and her son, who was non verbal, came over and said "I'm thirsty!" so she got him a drink and then he drank it and said "that was great, I love you Mom". She said then he went and played and interacted and it was just like she always thought it would be. She said he came back to her and said it again, "I love you, Mom". And then I woke up, she said. Waaah!

I have to say, I never dream that Anthony is different, but I have dreamed that he is talking and talking to me. I think it was even before I had Maria talking. It was so nice, in my dream, the way he was just chatting about his day, whatever. I never dream that he doesn't have autism. I never dream that he is in a regular kindergarten or whatever because I have no reference for it, maybe. Or maybe .. I don't know, it's not a figurative dream of mine that he'll talk, so it's not a literal one. I used to want him to talk and now I just think - I want him to be happy. Mike says, and I agree, we want him to be interested in SOMETHING. I don't care if it's us, just something.

He had a good day today and he is going to start going all week next week, so I'm hoping that works out. He had a good day in occupational therapy today and that's always promising. It makes him mad, I think, to feel so good in OT (he swings, jumps, crawls through stuff) and then he has to get back to work and I think he's mad about it, sometimes. But hopefully as he continues with it, he'll be able to do some stuff on his own to make himself feel good.

We are moving a week from today. I hope you people out there are praying and thinking good thoughts for us and especially for Anthony. My sweet Aunt Joan emailed me last week to wish me luck and I can feel it, every day. I can barely do this job, but I know for sure I couldn't do it at all if it weren't for my family and friends being so good and sweet to me and to Anthony.

Counter Raisins

 
He loves sitting up there, eating those raisins. I am praying there's nothing for him to climb in the new kitchen.

So intense!

 
He had a good day today, although this picture is from yesterday. He woke up well and had one minor freakout on the way home. I've probably just screwed up the next two hours by saying this.

Quack

 
At first we thought he wanted to put it on, but then we realized he just liked the way that it felt. It is super soft.

Sunday

I haven't taken a picture of Anthony today, he had a ROUGH ONE. He is wearing, or I should say he WAS wearing this shirt that my friend Teresa gave him. She gives me a LOT of her son Garrett's hand me downs and I love them. But anyways, he's wearing this shirt today that says I AM STRONG AND BRAVE. It's so soft and great and I just love that message, because he really is. I know that we will get this worked out and he will get better. He has had some WHOPPER tantrums lately. Late at night, early in the morning, no time is safe! Last night he was flipping out until almost 11 and then Veronica was up at 4:45 so - it makes for a short night. Last night in church, I was reading the little writeup about the Gospel. The Gospel reading was the one about Jesus on the cross and the two criminals speak to Him and one says, "Hey get us out of here!" and the other says "Remember me when you come into your Kingdom". Anyways, the write up said that we always WANT love and painlessness from God and we wonder why He can't just get us out of here when things are tough? I personally think this ALL THE TIME! But, it said, God is not a King like that - He is a King like He is a person, too. He does not promise us painlessness, it said, but love, and you can tell that when you see Him hanging on the Cross.

When things are going okay, and I've had enough sleep, I think, welllll that makes sense. BUT things are often NOT going well and I'm ALWAYS tired so mostly I think well, that might be the way it is, but it doesn't mean I'm always going to like it. I am still praying for a miracle.

Saturday

 
This picture is actually from yesterday and then I forgot to post it! Ugh, these weekends are just awful. I told Mike, I don't know what to do. I can't pretend that they are the same as weekdays, they're not! I went out last night and had such a fun time but I was out laaaaate and then of course Anthony was up at 4:00, howling away until Maria started and then he went back and she went back and then there was pee everywhere in his room and blah blah blah blah blah I'm tired. We've had road crews outside the house all day today and it's super noisy and sometimes shakes the house and everyone is a little tense from it. Mike took Anthony to Costco and he said A was pretty tense and on the edge but then he got some blueberries gave them to him and he was better. I can't believe next weekend is our last weekend in this house, that's crazy, right? I am praying and praying that Anthony does okay with the move. I just hope it all works out and that we're all happy. I hope he doesn't miss this house, the yard, his room, the basement. *I* am not going to miss that basement at all - I am so looking forward to just having two levels to loook for these kids. I wish I could wake up tomorrow and have it be December 1!

Dedication

I am so dedicated to posting every damned day this month that I am posting from a bar, on my phone! Aren't I wonderful? Ha! I was thinking about being thankful because thanksgiving is coming up. So. I am thankful that my sister Laura is babysitting tonight, so Mike and I can go out and I can ignore him and post this, ha. But seriously, I would not make it through my life without her and especially the last few years. She comes over every Thursday on my long days and everyone poops on the floor and yells and it's crazy but she stays anyway, even bringing dinner sometimes! I am praying she gets this job she wants, even if it means no more weekly visits. Aren't I selfless? ;)

the kids loooove her. Maria came down from her nap today and saw her pOcketbook and said "Lolo's here!". Anthony loves her so much, he melts into her arms most days. And he is so comfortable with her, he has no problem pooping on the floor right where she is about to step, ha!
I am thankful for many things, and many family members especially, but this will be all I'll discuss tonight, as I am already weeping in the bar. Lame.

I am Hatred

This is an excellent video, in my opinion. I think these text-to-movie videos are so interesting It says "if you can type you can make a movie" at the end. I'm not sure about who makes them or why but I find them interesting and funny.

Poor Anthony had a bad start this morning, he had a tantrum that lasted 45 minutes, which is a looooooong time if you are in the middle of it. He has been sick, I don't know if that's it, or what. Maybe he hates his room? Maybe he hates mornings? I don't know. Mike says we are going through a rough patch right now, is all, and I am just going to believe that. Veronica is sick and has been up like every third night for WEEKS now, and it's getting OLD. Mike was up with her from 12-2 and then I from 2-3 and then I got up with her again at 5:00 and Maria was up before 6:00 and then Anthony woke up, flipping the flip out, around 7:00. Not cool, children! It makes for a very sad and tense morning.

Anyways. He is at school, I assume he's fine because he seemed better all day yesterday and we haven't heard anything. I am crossing my fingers and praying, as usual, that things go better tomorrow.

Last Friday

 
It's hard to believe, on this rainy crappy old Tuesday, that just last Friday we were outside playing! Here's Anthony with Amy, who we all love so much. Maria waits and waits for Friday! And Amy! Today I went up to get her from her nap and she was yelling until I came in. I said "Hi!" and she said, all impatient, "are we going to see Amy TODAY?".

Anthony is home this afternoon and so is Mike, thank God. Veronica and I were sick and now Anthony is sick. The only ones that are safe, so far, are Mike and Maria. Anthony is really no different sick than he is healthy, if he doesn't have a fever. He just must have kind of a stomach bug and although Veronica is throwing up all over her father, seemingly all the time, Anthony just has some d-ha, as my friend Emily calls it.

I am looking for pictures for our Christmas card and I came upon this one. Have you ever seen such a smile? I think about that woman who killed her son, did he never smile? Was he never happy? How does it get to be too much?

Question

Stimey asked this question, in the comments from yesterday's post:

Don't you just wish sometimes that someone would just tell you what to do?

My answer is YES. It blows my mind how alone we all are in this. I remember, when I was pregnant with Anthony, people telling me how shocking it is to go home from the hospital with a newborn. How they just LET you walk out of there with this BABY and you are supposed to take care of it. When we brought Anthony home, I do remember thinking that it was just the three of us, but I don't remember being so shocked and scared that we were in charge. I am an OLDE mother, so maybe that's why I wasn't so worried.

BUT. I do get worried now. I wonder how can it be that Anthony is so profoundly affected by this and there are almost no resources available to us? We can send him to his school, but when he has troubles there, they ask us what's going on. We can take him to his regular pediatrician and his developmental pediatrician and they can tell us that there's nothing physically wrong with him, and that he can take drugs to calm him down. We already know all this. We know this just from being people who have been alive for a certain amount of time.

What we don't know is how to make Anthony feel better. I feel like if he had a sickness, a physical sickness, they wouldn't just leave us alone with it. Mike and I both have advanced degrees, we are intelligent people, we have worked for many years and still - we have no idea what to do when Anthony is whacking himself in the head. When he is kicking me in the throat (still mad, I guess). When he is saying "okay! It's okay!" and crying like his heart will break. When he wakes up so mad and sad and we have to get him and his sisters ready to go out.

Who do we have to look to for answers? Jenny McCarthy? Really? Questionable doctors from England, who have been disproven time and time again?

So. Yes, I would like very much to be told what to do. I would definitely prefer being told what to do to this flailing around, feeling like every choice we make is wrong. But there is no one there, there is no one to help US and we are the only ones who can help Anthony, so what can you do? If anyone knows, feel free to leave it in the comments. :)

Edited to add: It freaks me out when I read stories like this. What must life be like, when your only option is to kill your child? Good Lord.

Sunday

 

I never really believed things like when you love someone, it doesn't hurt when they hit you, or whatever claptrap there is in the musical Carousel, but I'll tell you what: Anthony kicked me so hard in the throat today that even now, an hour later, it still really hurts, but I don't feel like it hurts. I feel so sad about it, and I feel so worried about when he gets bigger and he kicks me in the throat, but mostly I just feel so sorry for him. These tantrums are insane - I mean, they are really crazy. They come out of nowhere and I know they won't last long and I want to help him, but what do you do? I ask him, "what do you want?". I make recommndations, like "how about some squeezes?". I read all this stuff online about it and it just has nothing to do with us. "Eventually", on article said, "your child will be able to tell you what he wants". Um. NOT LIKELY. I feel like there is so much information out there and none of it is for us.

But then - he's just better. He just gets better and he comes in the kitchen and pushes the water I offer away, but takes a cookie or two and he's better. I don't understand it, I don't, but I just hope it stops soon.

4:30

He woke up at 4:30 this morning and although he was upset at first, and he had a RECORD SETTING tantrum earlier, he is doing better now. We went out to lunch and everything!

Friday

OH JEEZ is he CUTE? He had many moments of happiness today, outside in the yard. Amy brought him home for therapy and said that he must have been tired, his morning therapist said he laid down several times and his speech therapist said every time he sat down, he laid down his head. Ha! He was up LATE last night and early this morning, so he is tired. Anyways, she said we should maybe go outside and get some fresh air, but as soon as she said that, Anthony was all, "downstairs!", so we went downstairs for a while, then for a walk, then played outside. Amy set up some boxes that I have in the yard (so trashy) for them to climb through and he loved it. He is so tired, but he really managed to pull out a fun afternoon.

The Listening Program

So I was talking to a mom of a newly diagnosed child and she said he has been doing The Listening Program therapy and it seems like it's going well.  I think maybe we'll look into it for Anthony.  They have providers here, why not?  I want to keep trying stuff.

He is crazy.  It's 8:25 and he's up in his room, cackling away.  He laughs and chatters away, which is great.  Then sometimes he gets upset and cries, like before.  He cried and I went up and he was naked as a jaybird, which made me glad I went up there!  He was sweet, he said "good night" when I said it to him.  Well.  I said it SEVERAL TIMES and then he said it.  But he was sweet and lovey and lately he likes to play with my hair, which is cute.

See?  Not it's 8:26 and he's sort of crying.  Sheesh.  Oh, how I am praying that he likes this new house, that they all do.  We have our appraisal here tomorrow and that is the last piece of the puzzle.  I suppose it could go badly - they could appraise our house for less than what the people are buying it, and then I don't know what I'd do.  I am just hoping and praying that it all goes well - there is no reason that it shouldn't, our house is priced exactly right and it should be fine.  Meanwhile I am NOT that into cleaning this house again so some stranger can come in again, but at least this should be it.

Tomorrow is Friday, which is always a fun day - we have home therapy with Anthony and everyone gets to see Amy, which makes everyone happy.  Maria waits all week for it to be Friday!

No Pictures, Please!

Ha, maybe he's ashamed because he read my blog post from this morning. Not really, of course he doesn't read OR read this blog. Plus there is no shame in it - it just is what it is, right now, and it won't be like this forever. Mike and I are going to be more vigilant about checking on him and making sure it doesn't happen again. Also I am going to try to let him play with finger paints more often. :)

The Poop

Here's the thing - I don't want to talk about poop.  You can ask anyone, I never, EVER have liked to talk about it.  I don't find scatalogical humor funny, I just - blech, I just do not like to talk about it.  Once you have kids, of course, you talk about it more.  Some days it feels like it's all I do, talk to Maria about it, change Veronica's diaper, etc, etc.  But we had a situation here this morning that I want to talk about, because I keep feeling like I'm the only person this happens to and I just can't be. I know I'm not.

Apparently, we have to figure out something else besides sleepers for Anthony because now he is sliding out of the ones that are bigger, and unzipping the ones that are tighter-fitting.  Last night, I guess before he went to sleep, he got out of his nightie, took off his diaper, and pooped EVERYWHERE in that room.  Then he took his hands and smeared it everywhere it wasn't.  It was all over the floor, the bed, the walls, the closet walls, the door, the dresser, the window, and the clothes that were hanging in his closet.  Mike and I cleaned and cleaned and cleaned and then everyone went to school and then I came home and vacuumed and mopped and cleaned again and now I think it's clean.

I keep thinking of those murder mysteries on Lifetime, where they use the Luminol?  I think maybe I could make my living as a crime-scene-cleaner-upper, because I am getting really good at it.

It's so upsetting.  I hate the thought of him sleeping like that all night, although of course he seems largely unaffected.  He frankly seems kind of annoyed about having to take a bath in the morning, he's all "um, not for nothing, Mom and Dad, but I usually do this at night".  Maria talks to us incessantly while we are cleaning - "Is that POOP?"  she asked.  I told her yes, it's poop and we have to clean it up.  "Cause it's DIRTY?"  she said.  YES!  I told her, not wanting to miss an opportunity for some toilet training.  I told her, THIS is why POOP should go in the TOILET!  Because it's REALLY hard to clean UP!

Anyways.  That's what we're doing today.  We are going to start putting duct tape on his diaper, tape on the zipper of his nightie, and checking him before we go to bed.  It's so hard to tell the difference between his regular noise before bed and his poomaggedden noise before bed, we are just going to have to check.  Also, I think maybe we should stop feeding him.  Kidding!

Tuesday

Can it really be only Tuesday?  How is this possible?  What is up with the Daylight Savings Time phenom?  We haven't had DST for too long in Indiana, which I thought was hilariously weird when I moved here, and I still do, actually.  Lots of people HATE it and HATE the legislators for bringing it to Indiana.  Lots of people are MAD at our governor for MAKING us DO IT when it CONFUSES the COWS.  I'm not really mad at anyone but I am amazed at how early it makes everyone wake up around here and how long it has made the days seem.

Poor Anthony was up in the night.  Yesterday was Mike's birthday so we went to Five Guys for dinner and then to Cold Stone Creamery for dessert and then to Pat Flynn's to watch some Monday Night Football.  My sister babysat and she said she heard Anthony cry, like really cry, so she got him a glass of water and then went up there and she said he was FINE and DANDY.  He was all, "Hi, Laura, welcome to my room!".  Ha!  He fell asleep around 9:00, I guess and we went to sleep around 11:30 or so, then he was up at 1:45 with a dirty diaper (ugh, and a rash, poor baby).  He never really woke up, just cried and cried and then went back to sleep and we left.  Maria heard him screaming and she was up, but only briefly and then both girls were up at 5:30, which - ugh.  Too early!  Anthony slept until like 7:00, which is *whispers* pretty good.  I hate to think we are ever going to have to give Anthony sleep aids, I just don't like the idea of it, for him.  He has been doing great lately and I am not even going to erase that, for fear that I will jinx us.  I don't believe in jinxes.  I DON'T.

Anyways, I might add a picture later, but I wanted to post so I don't forget.

No Picture, but I had a thought about this post - I would like to do something productive with this posting every day, instead of just saying, blah blah blah, Anthony woke up, blah blah tantrum, blah blah we're tired.  I am lucky to have read a bunch of stuff on the internet and 'met' a lot of really great moms who have kids with autism.  So I go around with all this information and I don't share it and ... well, what the hell, right?  So here's a link to Stimeyland, one of my favorite blogs, and this is one of my favorite posts.  I recently made a new friend on Facebook, who just got a diagnosis of autism for her little boy and I recommended this to her, but I want to put it on Anthony's blog, too. So here it is.

Tired

He's tired this afternoon. Amy said he had a good day, and a great time at the park (it's beautiful here, sunny and almost 70 today), but that he got kind of upset right before I picked him up. He did okay, though, he ate a cracker and was fine on the long ride home. We played outside for a while after we got home and he seems fine. He's eating spinach pizza right now, getting his vegetables. :) It is my plan to get these kids to eat better once we move. I have a lot of high hopes, I know, but I just have to keep trying to give him stuff until I find something he likes. He likes: red sauce, cheese, pasta and bread. I am going to make pizzas and sneak stuff in and just keep plugging away with him.

Rough Day

Today is a rough day for Anthony. Sundays are the devil around here, for him. All day I've been trying to get a picture of him so I wouldn't forget to post today but it's been hard, because he's been crying a lot of the time. I don't even know what to say about it anymore. I hope it stops soon. It makes it difficult to live your life with this going on. I hope it gets better.

Saturday

Ooh how he loves to whip those hands around! I was going to write about his room today and I have a funny story. Well, not funny but whatever - Mike and I went to see a play last night and my sister babysat. She said Anthony made noise in his room until around 10:00 and I checked in on him when I went to bed, around 11:00. I saw a diaper on the floor and Anthony was lying on the bed, naked as a jaybird and all stretched out like Hugh Hefner or something. He likes to be naked, for sure. I put a diaper on him and covered him up and he never even woke up.

There's not much in his room. He has his bed, which is just a mattress and box spring on the floor. He has his dresser, which is actually Mike's old dresser, but we have to turn it around at night so he doesn't open the drawers and climb up on it. One morning, before we started to turn it around, he climbed up there, threw up, and then lay down and went to sleep! CRAZY. He has a beautiful window film on the lower half of his window, it looks like clouds and blue sky. On the window, he has a great, EXPENSIVE Levolor cordless blind, but he broke it so it's just sort of balanced on the window. The doors are off his closet, as he used to TEAR THEM DOWN during 'quiet time', before I realized that he is not the kind of person who wants to have quiet time. He has his rugs from Target on the floor, and his beanbag from Pottery Barn, and that's it. It's a boring room, but we can't leave much in there because he'll just mess with it. I think in the new house I'm going to do the same thing, put the same stuff in there, but I am going to get a few more rugs with different textures that he might like, and I think I'm going to get him a chair that folds out to a bed. No matter what, he is awake for a few hours after he goes to bed, so I figure he may as well enjoy himself. I hope he is happy in the new house - his room will be bigger, I hope it's not strange to him. I worry about it a lot but I also figure, what can we do? We are moving in 3.5 weeks, that's all there is to it.

Video

Well, I have fallen down already about posting every day!  So this is yesterday's.  I was going to post this cute video of Anthony talking for Amy.  We have been just doing the home therapy at home for the past few weeks and it's going pretty well.  He has had a good week, a LOT of talking, a lot of independent requests - 67 on one day this week and 64 another day.  He is so sweet and I like the idea of getting it on video.  BUT I have Windows 7 and it isn't compatible with my camcorder and I'm super mad about it and have spent waaaay too much time working on it so I am putting it away.  Maybe I will ask for Yet Another Flip for Christmas and maybe no one will drop it on the ground and break it.  THEN maybe I can have some video.  Waah.  I am still feeling very sorry for myself about it so I'm going to cut this off and have it count for yesterday and I'll post some pictures and pith later.

Backyard

We have a nice deck right off the back of our new house, and it's a super nice yard. It's only about half fenced, so we're going to have it fenced the rest of way soon after we move in, weather permitting. Our lives changed for the WAY better (to quote Maria) once we got this fence. It was like a whole extra room, to me. Of course, it's not the same for us since Anthony got OUT through the gate, but even now we feel pretty secure knowing that it's shut, we just have to check it more. When I think of him getting out that day, and us running around with no shoes on trying to find him, it scares the life out of me. I have literally never been so scared in my life. I just thank God that I had JUST put clothes on him so I knew what he was wearing. He was wearing his Fruit Loops shirt and his tan shorts, fyi. :) So if he ever gets out again and happens to be wearing those clothes, I'll for sure remember, ha!

The Kitchen

We will be waking up in our new house, God willing, four weeks from today. Our new kitchen is super nice and I am looking forward to having some cabinets that I can reach. Our new buyers are coming tonight to measure our kitchen, they are going to do some "remodeling", my Realtor told me. At first I was super offended, but really, the house is 17 years old! Some of those cabinets don't even have doors, because Anthony has stepped on them to get to the countertops. So I'm not offended, but I do really love the kitchen.

Anthony and I spent a lot of time in the kitchen when he was little. I always say about this house, "if you're not in the livingroom, you're in the kitchen", because there are just two rooms downstairs. I used to put him in the swing in the morning and unload the dishwasher and somehow the clinking of the glasses and plates would soothe him and that's how he started taking a morning nap. I used to keep him in his bouncy seat up on the island or the table, so he could be at eye level. He never liked to be "up heeeeere" on the counters the way Maria did, though.

He opens the fridge now when he wants something, and if he can't get the package open, he'll bring it to me. Our new fridge is similar to the one we have now, so at least that will be the same. I am going to make a NEW rule in the NEW house that they can only eat in the kitchen or the dining room and I am determined to stick with it. It has gotten a little crazy around here with the food - all three of them go anywhere they want with food and then I find a RIDICULOUS old hot dog downstairs, like a month after it was left there.

He had a rough morning today. He somehow got out of his pajamas in the night and it was kind of a mess in his room. He had to take a bath and it seemed to mess him up, as he usually takes a bath and then goes to bed. Plus Maria and Veronica are ALWAYS all up in his grill, it would make anyone mad. I think he's mostly a very patient boy.

Favorite

This is one of my favorite pictures of Anthony, Mike took it and we used it for his birthday invitation that year. He seems like he used to be happier, right? And laugh more? Ha, me too, I keep thinking. I wonder if parents of typical children feel this way - are they all just less complicated when they are 1.5 or 2 years old? I guess for us, we won't know until we get Maria to that age - which feels verrrry far off, indeed. Sometimes I think she still has THREE years until she goes to Kindergarten and I just - well, it seems like she is a lot older than that.

Anyway. Back to Anthony and his happiness. Sometimes, even if he doesn't seem happy, he seems content. Unfortunately, he seems content when he is, like, stimming with his hands, in front of his nightlight or something. Normally, I would say, I don't care - if he's happy doing it, he should be able to do it! BUT I think it can actually be harmful to him, so we try and move him on to something else. We try to redirect him from what's making him HAPPY to something that will make him UNHAPPY in the short-term, but maybe happier in the LONG TERM Of course, he doesn't care about the long term, what child does? I don't know, but I don't think there are many kids saying "gee, thanks, Mom, for not letting me do this thing that I think is super fun, so that I'll be happier many years from now".



We are moving at the end of the month and we'll be in a new school district. It's supposedly a better one, I've heard a lot of great things about it. We intend to send the girls to Catholic school, so I don't really care about it for them, but I'm excited about it for Anthony. He is going back to Little Star five days a week, starting right after Thanksgiving. I feel like it's the right choice, he misses some things at school because he's out a day, plus he doesn't get to work with his Tuesday/Thursday therapists as much and it's harder for them to get to know him well, etc., etc. Our new house will be a little closer to his school and that will be nice too. These girls of mine are getting SICK of the long ride!

Anthony had a good morning today, which of course worries me that he will have a bad day at school. It seems like if it's not one time of day, it's another, for him. I am looking forward to when he is just HAPPY, or CONTENT, or at least not so sad/mad at least once a day. I'm hopeful it will be soon, maybe we'll all get it for Christmas. :)

November 1

So it's November and I wasn't going to post every day because it's sure to be one of the busiest Novembers of my life, because we are moving, but I am going to give it a shot.  I'm going to try to think about our house as I post.  Mike and I have only lived here together a little longer than Anthony has, since he was born less than a year after we got married, so we are all going to miss it, I bet.

I wish I knew what Anthony would think about moving.  I think it will be nicer for him to have a bigger room, but then I think, does he?  Would he?  I can't keep much in his room, because of his propensity for throwing everything around at bedtime, but maybe I can get him some more pillows for his beanbag, or maybe put a swing in his room or something.  I think that where we are moving has a better school district and we won't have to fight so much with them, so that's good.  It has such a nice deck on the back and maybe Anthony would like to hang out there, I think.  This would all be easier if he would just tell me.  :)

That brings me to my next point.  So there is this idea for today, November 1, that bloggers and people on the internet don't blog today, or use Twitter or Facebook or whatever, because we're supposed to be representing for people who have autism.  I was thinking of doing it, but then I thought, what?  Why would it make a difference for someone like me to not talk?  I can talk.  Apparently, some nonverbal people with autism were mad about it too because the only way that they can communicate is online.   I shouldn't say the only way, but I mean it's a great way for nonverbal people, who can communicate in other ways, to communicate.  So.  Bad idea, at least for me.  Also, a bad idea as far as this mom whose blog I read is concerned.  Besides, I swear Anthony is one of the very few kids with autism I know who is nonverbal.  Sometimes I meet moms of kids with autism and I think 'great!' and then it turns out their child can talk and - ugh - it is just not the same.  It's sort of the same, but not the exact same, which is what I'm looking for.  I'm looking to be friends with an autism mom whose child is nonverbal and maybe one or two years older than Anthony.  I want her to have done just the right things and have her life be great and then she can teach me how to do the right things and then my life will be great.  So where is she?  Ha!

I keep thinking, mostly when Anthony is screaming about one thing or another, maybe we'll be really happy in this new house?  Maybe Anthony HATES this house and that's why he's so mad all the time?  Wouldn't that be nice?  I'm aware this is nuts, I'm just kidding.  Mostly.

We brought Anthony home here on June 8, 2005.  I remember they were putting siding on or painting our house so it was super noisy and I would be sitting in a chair or on the bed, nursing Anthony,  and UP would POP some guy who was working on the house.  AWKWARD.   Anthony stayed in our room for the first several weeks.  He really stayed in our arms the first several weeks.  He would NOT lie down without screaming.  I remember one night I was in our bed with him and Mike was in the guest room (which we would lose, of course, to Maria and then Veronica).  I nursed him and he seemed so sleepy and I thought, I am just going to lay him down, what could it hurt?  I laid him down and then put the Boppy pillow around his head, like in an upside down horseshoe and he slept for like TWO HOURS.  It was probably when he was about a week old and it was probably the first time I slept for two hours in a row since before he was born.  We laid him down more and more and then we went to my mom's house and stayed for several days and my mom kept putting him down, which made me crazy at the time, because he would wake up and cry but it was good for him.  Eventually he started sleeping longer and longer out of our arms and then we started putting him in the crib in his room.  He never laid down his head one time in his bassinet, not ONCE.  We used to keep laundry in it, ha!

So cute.  2007, in the livingroom.  

How Do I Deal With Stress?

This is part of a blog hop about what I do, as a parent of a child with autism, about stress

I guess there is a lot of stress involved with raising a child with autism, but I tend to focus on the stress that occurs when one's two and one year old daughter crawl up one's butt every damned day of her damned life, so I can't even think of what stress Anthony causes me.  

I know that it is a near constant worry, that we have about Anthony.  I think about him all day while he is at school.  I worry more now than I used to, because of the tantrums that he has now.  Sometimes I go get him at school and his eyes are so red and I know that he was just crying hard and it kills me.  I hate that he is at school, being upset and maybe wondering where I am, and I'm not there.  I'm down here, miles and miles away, trying to pry Maria or Veronica off my leg.  Logically, I know that he's fine, but since he started having these tantrums, I can hear him crying in my head, even when he's not.  

In the mornings, Mike goes in to get him and he always says "Hi, Buddy!", so cheery and happy and I wait, poised and tense, to see how Anthony will react.  Often, he is upset in the morning.  Often, he'll cry and yell and Maria will say to me, "Anthony doesn't feel good, Mommy?", and I'll say, "No.  No, he doesn't".  

Lately in the paper we've been reading - well, Mike reads it and tells me - about some sad autism stories.  A five year old was saved from drowning in a retention pond, after he left his apartment while his mom was lying down (I think to myself, NEVER LIE DOWN).  Parents of adult children with autism are told to leave them at homeless shelters, if they can't take care of them.  This is in Indiana, which is AWESOME, right?  It puts a whole different light on commercials when the Governor talks about how we are in such great shape, financially.  

Soooo, I guess I'm saying yes, there is stress.  How do I handle it?  I pray daily and almost hourly.  I pray for Anthony, I pray for a miracle, that he can handle his life in the world.  I pray for strength, and I pray for Mike and me.  Please note, this does not always work.  Sometimes, I get so mad and I think, how could God want my little boy to be screaming and crying like this?  What does this mean?  Why should Anthony be punished like this?  But that's only sometimes.  I know that mine is not to reason why, I know that I can just do the best I can by Anthony and that's that.  He'll have to live with us forever, he may never get a job, he'll never be toilet trained - these are things I worry about, but really, they could all be true of the two girls, too.  They're not *probable*, but it could happen.  Anything could happen to anyone's children, it's just that Mike and I know a little bit more about Anthony's future than we do about Maria and Veronica's.  I'm always saying I want to know the future, so maybe this is the way that I do?  

I do try to go out, I probably go out too much.  I like to go out and talk to other people, I like to go out with Mike.  The reason it seems like it's too much is because whenever we go out, it seems, the children know and punish us by waking up early.  Last night, we went out and were home before 11:00, I watched a little bit of a movie and fell asleep by 11:30, and then at 3:45, Veronica woke up and was up until almost 6:00.  So, it's fun to go out but it's never fun to be so tired, so that actually ends up adding to the stress and not alleviating it.  

I read, we watch a lot of escapist television, I try and work out.  I eat ice cream.  Honestly, we just plug away and try to plan a lot and not think too much.  We have put a lot of thought and work into what we are doing with Anthony right now, but we have to have faith that we have made the right decision and let it go, a little bit.  I love his therapists and I know they treat him like he's one of their own, and that's all I can ask.  I also try to not look for fights (believe it or not).  I can't look for offense in every single thing.  For example, right now there is this quiz going around Facebook about "Your Autism Quotient" and a lot of my friends have taken it.  They have taken a test to see how autistic they are.  It makes me mad, kind of, because I think if you are taking an adorable quiz about it, perhaps you don't have to worry that you have AUTISM.  But I am not going to be mad about it, I'm not going to look for things that separate me from my friends who have only typical children.  I'm going to look for things that make us the same.  We are all parents.  We have more similarities than differences.  

He's a beautiful, lovely boy.  He never screams at me or gets mad at me.  He works so hard.  He tries all the time.  Why should I be stressed out about that?  He is just who he's supposed to be, right now, and I get to be his mother.  Sometimes I can make him feel better when he feels just *awful*.  I always try and remember that, that I am here to help him, and that I have been given the ability to help him.  I don't always succeed, as I said, sometimes I get really mad.  But if I'm honest, I am mostly always mad at Maria.  Ha!  

Hoo Boy

Isn't he so gorgeous? I am always snapping away, saying 'Anthony! Anthony!' and he largely ignores me and then sometimes, like in this picture, he looks right at me. I wonder, does he wonder why I am taking pictures and crying? What does he think of me? He probably thinks I'm a NUT, and he is probably RIGHT. But it's just such a gift, out of nowhere, when he looks right at me.
He is having a good weekend, even though he had a horrible, HORRIBLE morning yesterday. Ooh wee, did he have a meltdown, and it is getting harder and harder to MOVE him during it. If he is in the basement, though, I like to move him to the carpet, because he really flops himself around and I'm scared of him hurting his head.

Friday I and the girls met Amy and Anthony at the park and it was ROUGH. I am not proud of my behavior, because I was very tense after a long-ass ride to the park, and then Anthony was mid-meltdown when I got there. I feel like I should be SMARTER and more ON TOP OF THINGS with regard to Anthony and I'm always so mad when I'm not. I think we should have been keeping the HOME in home therapy and we have been going out too much. I think it's overwhelming for Anthony. So anyways, I was mad and grumpy and even though I told Amy I was sorry, I want to say it publicly too - I was a big jerk and I shouldn't have been anything but nice to you, Amy, since you are nothing but nice to us. So. Anyways.

We are looking at houses and making bids and counter offers and I will be glad when this whole part of the process is done. It makes me sort of hate the people that we're dealing with and I don't even know them! But like - people are SUCH JERKS. When the people that bought our house made their offer, we counterered right away and then we just sort of kept it moving. We are supposed to hear by 6:00 tonight from this couple whose house we are trying to buy and they probably won't have an answer til this afternoon, and it will probably be no. So ... why make someone wait? Why make us waste a Sunday afternoon where we could go look at our second choice house? Just to be mean, is why. So I hate them. SO it's probably best that we move through this process as quickly as possible. Last night in church there was the Gospel about the Pharisee ,who goes to pray and says, basically, 'thank you, God, that I am so much better than the rest of humanity'. And I read it at first and I thought, 'do I know how that feels!', and then, of course, the point is that that actually DOESN'T make you better, to think that you are better than everyone else. So. I am a work in progress, and I would like to be away from situations where I judge others. Ha!

Brrrr...it's cold in here!

I have been thinking about the term 'refrigerator mother' lately. I know that I was never cold or ... absent from Anthony or whatever, when he was a baby, or really ever. He was breastfed, I never put him down, hardly! I did and do love him so much I feel like my heart will break sometimes. I don't worry or feel guilty that I made Anthony have autism. BUT. Lately I think I can see why a person would look at a mother like me and think that I'm cold. Anthony has been having these meltdowns for about seven months now, almost every day, sometimes worse than others, but on the average, pretty bad. His OT said this week that he had a meltdown and she did some exercises with him to ease his 'tummy pain'. I asked her, did he have pain? She wrote back to me and said that she thought he had "pain" (her quotes) that was maybe caused by constipation, maybe not, maybe gas? I am just - what the hell? Not to get too far into Anthony's personal private digestive system but he has never been constipated and I've also never known him to have gas.

So I have to start, all over again, with another professional and say YES we took him to the doctor and NO they do not think he has any stomach problems. It is exhausting and annoying and also it makes us worry that maybe there is something wrong? But I am not going to fall prey to that kind of thinking. I feel like when he was a baby, like everyone says it's ME and what I'm FEEDING him and then I say, hey wait! How can you fix his stomach by running the blow dryer? And then everyone is quiet.

So. Tonight Anthony had a terrible, terrible meltdown, out of nowhere, same as usual. He was really crying and I said to Mike, just let him go. I said I can't do it one more time and I have to do the dishes anyway. So I did the dishes while Mike stayed with Anthony downstairs, he was screaming and crying bloody murder the whole time, maybe 15 minutes. And I was thinking, I have to be a little bit cold about it. I have to sometimes just want it to start, so it will end. It scares the girls and it scares Mike and me, and I'm SURE it scares Anthony. But if I wasn't a little bit hard to it, a little bit cold about it, I would just go around crying all the time and who the hell would that help? You have to steel yourself a little bit and if it comes off as cold or whatever, I think that's too bad. I think of those poor women who a DOCTOR told, 'this is your fault'. I can't even imagine. It's already hard enough, we're already so nervous all the time, we never know how he is going to wake up, how much he is going to scream, if he is going to flop his body on the hardwood floor, will he flail and hit the girls, etc., etc.

Um..I'm trying to think how to end this on a positive note. It really is positive, sometimes. Often! Lots of people have made donations to Little Star, for which I am very grateful. Anthony is doing very well there, even when he has meltdowns there, he still gets his work done, he is blasting through his goals, and we still love his therapists. We are doing home therapy and we have been going to the park, the museum, the zoo, etc. Things are good, except for when they're not. Which is, I guess, always the way.

Vision

See how he's not looking at her, but he's putting his hand out to stop her from smashing that walker on his hand? He rarely looks at what he's doing. When he does stuff at school that requires him to match something, it seems like he's not looking at it, but then he must be, because he puts the thing where it's supposed to go. It's weird, but not uncommon.


I am still asking for support for Anthony's school. If you haven't yet, please make a pledge. I'm going to keep asking through October 22!

Friday

I am still asking for money for Anthony's school, but I want to make a post about his week, so I'm just going to leave the link here. It has been a busy week and in fact, I am typing this around Veronica, who is sitting in front of the monitor, just so I can get it done. I suppose I should find it flattering but mostly I find it annoying. ANYWAY. Anthony's week, you ask? It's been pretty good. It started out not so great, he had a lot of tantrums early in the week, and BAD ones, long lasting and vile. He gets very upset and there is no real reason why. I read in a Temple Grandin book where she said that if a child is having a tantrum and there is no reason for it, that is, they are not trying to get out of something, then there is probably a sensory problem at play. SO. We are working on it. He missed OT at school for two weeks because his OT was sick and he is going to miss next week with his OT at his public school, so I'm glad we're doubling up!

We have been fighting with his insurance company. They are so terrible, it is disgusting what they will try to get away with. I guess there are some people who only pretend to go to speech therapy and I guess there are some speech therapists who only pretend to give people speech therapy. Since insurance companies treat everyone like they are the lowest scum on the earth, they treat us like we are trying to GET AWAY with something by sending Anthony to speech therapy. After 10 months, they decided they needed to see "progress notes" on Anthony's therapy, to see if he's, duh, making progress. If he's not?, I asked them, what happens then? I ended up speaking to this woman who was a HUGE help to me, but she is still kind of the devil because she works for Anthem BCBS. Anyway, she told me if the medical review team thought he wasn't making progess, they would want to stop paying on it. But I could always appeal, she said! In writing! We aren't there yet, where they are refusing to pay, but it's nice to know if we get there, I just have to write one million letters, which I totally have time for.

We are hoping to just get the notes and get them sent in and get the claims paid. Anthony is with a whole nother speech therapist now, anyway, and the billing will be done through his school so Mike and I won't have to get involved so much. I'll tell you what, though, I would not work for the insurance industry in a million years. What a bunch of soul-less scumbags they are.

SO! Back to Anthony! Last Friday we played at the park and we had a great time, this Friday, Amy is coming here. I'm glad that at least the house is clean, because we had that showing yesterday. :) Maria waits all week to see Amy, every child I have loves her to death. I am hoping that we can go to the orchard this weekend, it's supposed to be really nice. We wanted to go last week but it was cold and rainy on Saturday. It's supposed to be like 80 this weekend, so I think we'll be okay. I want to remember this weather in two months when we are all freezing!

Sunday

Anthony with Mike's mom, and with our niece Hillary. They had a nice visit. He has had a good week, so far. Today at school he had "Jump Bunch", which is, from what I can gather, all kinds of sporting stuff. His therapist said he independently kicked three soccer goals! He still has a few times every day where he gets upset, but I have to say they are getting to be fewer and farther (further? Farther, I think) between. I am hoping that the weather is good this weekend so we can take them to the apple orchard. They have these hay bales that you can play in and I think Anthony would really like them.

Cute picture

Poor Anthony

Poor, forgotten Anthony. He is in school all day and then we are all crazy when he is home, through bedtime, and I never get any pictures. I took these yesterday. He had a kind of a rough morning and then had a good, but calm (?) day at school. He also had a little rash on his side that's all gone now. Who knows what goes on. This mornng, he is at his public school so he'll be home for a long day. I hope he does okay, usually he's not wild about being home.

He is doing okay. He cried a lot last night and we both went up, he was *extremely* sad. It's so hard and confusing, because on the one hand, of course you feel sorry for him. But on the other hand, holy loud!, and I'm afraid he's going to wake up the girls. Veronica fell yesterday and bit her tongue and I was hoping she'd sleep all night and not need any more Tylenol. Also, he will be crying his heart out one second and then laughing uproariously the next second, so you kind of feel like you are getting played. You're not getting played, he really doesn't have the ability to do that, but it FEELS like it. Anyways, then he calmed down and eventually he went to sleep. He has been on a pretty regular sleep schedule here lately, it's much bettter than it was this time last year. I don't want to say too much about it.

So things are just the same as ever, Mike went out of town and came home, we should all be home now through the end of the year. Thank GOD.

Some video for Amy

I was telling Amy the other day about these videos I have of Anthony watching Signing Time.  Here's one, where he clearly says "brush teeth" after Rachel does.  And here's another one, of him doing a Wiggles dance.  Here's the last one, of him doing the "all done dance" from a Signing Time DVD.