Sweet November

Well it's over and I posted almost every day.
I'm glad it's over but I'm glad I did it too. We moved today and Anthony is up in his bigger room, knocking around. He could not fall asleep past night, I went in at 12:30 and lay down with him til he slept. I haven't seen him fall asleep in a long time, it feels like. He was as sweet as can be, just like I remember.

Last Monday

I am a big counter-downer, so this "last" this and "last" that really appeals to me.  I was thinking this morning of this house and how much I loved it when my sister and I had it built.  There was just the two of us, and we really knocked around in here, we had plenty of room!   We had a lot of fun here, as I recall.  It seems like a long time ago!  When Mike and I moved in, we painted all the rooms, which helped make it feel like ours, a little bit.  I painted Anthony's room last, I was home on spring break my last year at work.

When I started staying home with Anthony, and he was so cranky and fussy, I hated this house.  It was SO noisy.  Every floorboard made noise, it seemed.  I couldn't BELIEVE all that went on here during the day, it seemed like every time I turned around someone was building something or knocking something down, all of it so noisy.

But now I really feel like we will miss it.  What will he understand about it, I wonder?  I'll be glad to not have a basement anymore, because I am sick of having them be on three different floors at once, but will he miss it?  Will he be mad?  We'll see, I guess.  This is by far the craziest thing that has ever happened to us.  I may have to post tomorrow from my phone, I'm sure I will, but I'll have practically completed the 30 days for November.  I'm glad I did it this month, last year I did it and it was very depressing and even though things are kind of crappy for the most part, it was better this year.  Maybe by next year it will be downright cheery!

Sunday

I took no pictures today, we just packed and packed. Tomorrow will be our last night in this house, that's crazy, right? Anthony has been just fine today, well, the same as always. He is really enjoying the dropping movement that I'm doing with him. I assume if he keeps liking it, you'll soon be able to bounce a quarter of my ass, so there's that. Sunny side!

Saturday

Ugh, I was going to say that it was Sunday. These long weekends are KILLING me. Maria kept saying today, "I go see teacher TOMORROW?". They are all off their schedule. Anyways, here is Anthony with his sisters in the bathtub last night. He is *wary* at best. Veronica, as you can see, if having the TIME of her LIFE! Anthony seems to have kind of a soft spot for Veronica. Today I was holding her and kissing her belly and she was laughing, adorably, and Anthony actually looked over at her. Big excitement!

He had a hard day today, a terrible awful tantrum last night right before I went out, and just ... not a great weekend. I was so MAD today, he was flipping out and Mike was at the store with Maria and Veronica was upstairs and I was downstairs with Anthony. I was doing joint compressions on him, his ankles and I was trying to do them really hard, so that he could feel them through the tantrum. I started to PUSH against his ankle like I was PUSHING against this stupid autism that is kicking our collective ass here lately and it really felt better. I thought, there has to be a way to make him feel better, he can't tantrum like this for FORTY minutes! You should see the way he FLOPS his body into the floor! He has bruises on his back! So. I was getting a little mad about it and I tried to hold him, like cradle him like a baby and then DROP! him. This involves me holding a 55 pound person and then doing a fast, deep knee bend. He loves it, of course. "Drop!" he says. Actually, he tries to get away with saying "Drum!" because he can be kind of a lazy S.O.B., but I make him say "Drop!" and then I do these deep knee bends. Oh, he started to laugh and relax and my legs were burning, ON FIRE, but I did not care. I would have done them all day. I know it's such a relief to him when he is let go from the tantrum and it is to us, too.

Tonight in Church the gospel was about the "Stay awake!", thing, because you'll neither know the hour nor the day. I thought, I'm awake. Don't you worry. I'm always awake. :)

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!