Where Did My Baby Go?

Ha!  Just kidding.  Stimey posted that I specifically DIDN'T say that when I posted about Anthony losing his tooth and it's true, I do not feel that way.  I feel much more that it's disgusting than I am wondering where my baby went.  My baby is still there, he's still in there.  Sometimes, I am so lucky, because I get to rock him like a baby.  I get to pick him up and carry him.  I get to comfort him when he is crying and he doesn't know why.  I am very lucky.  Which I try and remember on days like today, when Anthony wakes up at 4:30 and hoots and hollers so much that he is difficult to be with.  He was hooting away in the van today after I picked him up at school and Maria said "Anthony.  Veevsy and me are trying to watch a MOVIE and we CAN'T HEAR!".  Ha.  He cares not, I told her, but I did tell him to shoosh.

He did lose his tooth!  I would take a picture but he is all wound up and I tried to take like TWENTY before and he wouldn't stop moving his head so everything was blurry.  I'll get it some time.  His therapist brought out his tooth in a bag!  Pam (his morning therapist) wrote a note that she just reached in and pulled it out, yikes!  She said he was very brave and indeed, it does not seem to be bothering him.  He also pooped on the potty at school again today.  He has yet to thrill us with this trick, but I know it's coming.  I'm so happy and proud of him with the toilet training I can't stand it.  I can't stop talking about it.  It might be the biggest thing we've ever done for him.  Not that we're done but still.  The starting was it for us, it's such a thrill.

I do get scared that he is getting so big, but I guess I am more scared that he is going to get bigger than me and kick my ass some day.  I hope that we can get it together, tantrum wise, before he gets big and could hurt himself or others.  It does make me sad when I see that other kids from his playgroup are starting Kindergarten this year, some are in First Grade.  But - we're just not - we're not the same as other kids, and that's fine, really.  I worry about the future, but not actively.  I have to take this all one day at a time or I'll go crazy and who needs that.  Plus, I have to say, I think people are FULL OF IT when they go on and on about how much they'll MISS THEIR KIDS and SUNRISE, SUNSET, blah blah blah.  They are supposed to get bigger, they are supposed to grow up, they are human beings.  Period, the end, as I tell Maria 100 times a day.

Ugh, I read about this study today.  I have mixed reactions about it.  I don't know why Anthony has autism and no one else does, no one in my family or Mike's.  My second cousin's son is on the spectrum, but that seems kind of far removed, right?  Maria is obviously not on the spectrum and although I think Veevsy Voo has some sensory issues, she clearly doesn't have autism, so ... I don't know!  I don't know if this baby will have autism, but I don't know anything else about him or her either, so I guess I am just willing to find out.  I read this article today, about the study and it unnerved me.  First of all, I am nervous about anecdotal evidence with regard to autism.  The author (who is a blogger that I really enjoy) says that she knows lots of families with more than one child with autism, but I know mostly families with only one child with autism.  I have three kids and only one has autism.  So ... that proves nothing.  I am much more comfortable with scientific studies, but I am UNcomfortable with science to the degree that it affects me, or affects how many children I have.  If I listened to Science, I suppose, I would have only Anthony, since I was over 35 when I had him and I'm not supposed to have any more kids, right?  Because I'm elderly?  And more bad things could happen?  The American College of OB/GYNs says that it's much more dangerous for a woman my age to have kids, but nothing has happened so far.  I don't really care what they say anyway, because they are the same geniuses that put Autism and Mental Retardation on the same level on their stupid form that you have to fill out just to get treated by an OB/GYN.  They are testing for every freaking thing that your kid could possibly have before 14 weeks now, so that you can have the INFORMATION that you NEED to decide whether or not you keep the child.  How stupid, how UNscientific, in my opinion, that is.  How can you have all that information when you haven't even held that baby?  When that baby hasn't even been born yet?  So anyways, before I really get going, I don't necessarily believe or not believe that study.  I feel old and tired, so I hope that this baby doesn't have autism because it takes a lot of energy to just work with the one child with autism that we have, but it will not be the end of the world if this new baby ends up having autism.  No matter what the deal is with the new baby, we will feel like it's the BEGINNING of everything, because it will be.

Ugh.  Blather.  Anyways, 1 lost tooth, 2 times pooping on the potty, AND he is going to a Climb Time place this week.  Does it get any better?

Tooth

Anthony is losing his first tooth! It is disgusting. I'll write more later but I just want to record it.

Beautiful Boy

This picture is a few weeks old, Mike took it one day while they were out in the driveway. My phone is broken and I have to take it in to get fixed, so I moved all the pictures off of it, including this one. I love his hair so much, I was thinking about cutting it the other day and I just can't do it. I don't know what we'll do - we can't keep growing it and growing it but I don't know if I want to buzz cut it, either. Those are our only options right now, so I guess I wil just put it out of my mind and we'll figure out something else later. Maybe something will come to me in a dream. I just cut off all my hair, so maybe that's enough.

He had a good week, toilet training wise, but a bad week, tantrum wise. I suppose it is always going to be something. He didn't have to do any "work" at school the week that he was toilet training full-time, and he had exactly NO behaviors. So ... the message is, he doesn't want to do any work? That would be a bummer because he has to. I'm hoping it's just a settling-in thing, that maybe THIS coming week, he'll do well with toilet training AND not have a million tatrums.

He went to the Fair this week. Also, a miniature horse came (not on its own, ha) to his school, but I guess he had no interest. His speech therapist mentioned he said NO! really well several times while the horse was there. When he went riding this summer at camp, they said he was scared at first but then he enjoyed being up on the horse. I guess this was just a horse to pet, though, which to Anthony might not be any different than a giant dog, and um, I can see why he didn't like it.

He also went on the Fair train, so that's his first train ride. I wish we had a picture of all these things! I am not a person who is ever all, "oh poor me, what can I do, my child is going to school!", but I can see how it's frustrating and hard to not have them with you all the time, after so much time when you can just take their picture whenever you want, and do whatever you want. I remember when Anthony was going to school a few years ago and I was so surprised at how well he did, following directions. Mike said well, they're putting on the yoke, you know, this is life, you do what everyone tells you, etc. It's so depressing! Maybe that's what people mean when they get all sad about their kids going to Kindergarten? I seriously can't see another reason - what is the alternative? They just stay at home forever? I don't get it.


Anyways, back to Anthony. Here on Saturday morning, he is sleeping, still, at 8:33! This is almost 12 hours after he went to sleep but Mike and I both thought we heard him around 5:30 so maybe he was up for a while this morning. I hope and pray we have a good weekend, I feel like he is due a good weekend, or even just one day.

Day ... 9? 10?

Whatever.  We've been doing toilet training since last Monday.  It's going well.  I guess?  I want to talk about a very big accomplishment that Anthony had this week but I am unsure about the etiquette involved here.  I am not, believe it or not, a person who really likes to talk about poop.  I'm not a fan of scatalogical humor, I'm against it ALL.  BUT this is what's going on in our lives and it's not a joke, and it IS a big accomplishment, so I'm just going to say that Anthony pooped in the potty at school on ... see now I can't even remember.  I guess it was Monday afternoon.  I can't imagine the insanity that went on in that bathroom - I know that it had to be crazy and I hope he appreciated it.  I hope it was a big deal to him, too, because really, it's his victory.

He is doing well.  He is the most patient, wonderful boy.  I hope that this all works out for him because I can't imagine anyone being more compliant or working harder at something.  I think of training Maria, for example, and what would it would be like to have that jungle cat on the toilet for as long as we've had Anthony there, and - ugh, it's not pretty.  But he's been great.  His therapists that came home were great, too, we've had a really positive experience overall.  Even though I know that it's not about OUR experience, we are the ones who are aware of it, so I guess it bears mentioning.

We're not finished yet - he just moved today to 30 minutes off the toilet and 5 minutes on and that's a LOT of toilet time, but we are definitely moving in the right direction and that's all I can ask for, really.  He has had a few behaviors this week already and he had one horrible, horrible night where he fell asleep before 7:00 and only slept until 11:00 p.m. and then was up until SIX a.m. and had to go to school on Monday.  Yesterday, speaking for my own self, sucked too, sleep-wise, because Veronica was up at 4:20 and I couldn't go back to sleep.  I am PREGNANT, I keep wanting to tell them, and have it matter.  I need to get some REST, but no one cares.  Well, Mike cares, he came home for lunch yesterday so I could take a nap but I still felt sick and horrible all day from it.  And then I have to DRIVE a big VAN with all my KIDS in it.  Oy.  Anyways, back to Anthony.  He is doing well, today they have a horse coming to the school to do some riding.  I hope someone gets a picture.  Later this week they are going to the State Fair, so I hope he enjoys that too.  He is some amazing person.

Sunday!!

Sunday! **shakes fist at sky**

We had a rough day today. Anthony was up at 4:00 and fell asleep before 7:00 and woke up again before 11:00. Toilet training was rough this weekend, especially today. He had a lot of accidents and ... we just don't know what he understands and what he doesn't but he seemed to be getting VERY sick of that bathroom. We probably were, too. I don't know, I hope things can get better this week. I always do, I guess.

I'm so mad tonight, Veronica was up late and then Anthony was up and it feels like there isn't one hour of the day when some child isn't yelling or being awake when they shouldn't. I would like to get some sleep sometime but I just don't see it in the cards for the next ... several years? Oy.

Then I read this thing from this blogger about how You Should Make Your Kids Help Around The House and You are a Big Jerk if You Don't and think, shut up, blogger. I can't get any of my kids to help me. Maybe I never will, how about that? I'd like to just walk around slapping people through the computer, some days.


Anyways. I don't know what tomorrow holds as far as training goes. I'm so proud of him, he's so impressive, to me. I don't know what he knows about what we are doing. I try to explain it but if he doesn't understand he probably thinks I am a) crazy and b) mean. I hate it, I hope he understands what we're doing. Maybe some day we'll find out!

Long Week

Anthony is doing very, VERY well with his toilet training. It's ... well, it's just the kind of pain and fear that I had with Maria and toilet training. You are super excited for victories, and then two seconds later, you think, they are never going to be able to do this and I never should have started because now we have to KEEP doing it, etc., etc. It all seems the same. It's been nice to have his therapists here, it's more challenging than you would think to keep a kid in the bathroom! He is tired at the end of the day, but he has been a real trouper through all of this. He continues to impress us, ha!

Big Day

I do still take pictures of them, I swear.  But I always have to hide the camera or these darlings will THROW it to the ground so it's not just at the ready.  I want to update though because Anthony had a good week AND tomorrow is the big day when we are starting toilet training.  I am ... I am beyond nervous, but I'm trying not to be.  I told my sister today, it's not like *Anthony* is nervous and if he's not going to lose sleep over it tonight, why should I?  I have purchased all the stuff we needed (underwear (!), treats, etc.), and I am sending in extra clothes.  I am saying prayers and asking for prayers and that's it.  That's all I can do.

I'm grateful that we're starting the process.  I'm grateful that he's done well, and better than was expected, with the pre-requisites.  I'm grateful that so many people have given me information and sent books, etc.  I know that people are thinking of us.  I'm grateful that it's summer time, because there are less clothes to get dirty, ha!

We went to church today and it was my turn to go out with Anthony.  He did okay in church but as usual is TOO LOUD so we left after a while.  Everything was FINE, of course, until other people got involved.  I bet 20 people came in after we went out of the church, which is a lot, because Mass was 10 minutes underway when Anthony and I came outside.  Then some guy came out with his kid and the kid was merciless in following Anthony around.  The Dad, of course, did nothing and I felt like I had to watch pretty closely.  Anthony is not a person who would hit anyone unbidden, so far, but who knows?  He had his hanger with him and I don't know what he'd do if the kid tried to take it.  And NEITHER DID THE DAD.  So finally, it was making Anthony pretty tense and I took him outside.  Where it was extremely hot, but whatever.  I swear I haven't spent a comfortable summer since I've had kids anyway, who cares?  It reminded me of when Anthony was a baby and loved to be rocked outside.  I'd step ONE TOE in the air conditioned house and he'd start screaming again.

It wasn't that bad.  He was happier outside and he listened to me and stayed by me.  Then after a while, we went back in and the foyer was empty.  After a while, an older lady came out and she must have not felt well so she lay down on this pew that's in the back.  This happens a lot - people get sick in church - it's early, maybe they haven't eaten, God knows it's hot enough to feel sick, so it was not a huge deal.  In fact, I was jealous that she was lying down, ha!  Then that KID came BACK!, but the father held him this time.  We went to Communion when it was time and then we sat in church for the rest of Mass, soooo, not bad!  And as Mike pointed out, nothing we would have thought we could have done two months ago.

He's had a good weekend, he was super tired on Friday.  He was so sad and teary when I picked him up, it was heartbreaking.  No one at school seemed to know why, but I've seen it before - I think he just ... it just adds up, maybe several times he's wanted to communicate something and couldn't and it's hard, and sad.  Maria was so sweet with him, she held his drink and she said "ohhhhh, buddy, it's okay!  Don't cry, it's okay!".  He got better right away and then we had ice cream, so it was completely forgotten by the time we got home.  I hope.

So wish us luck this week - I am going to try to be hopeful for the best and prepared for the worst.  Even if we try and it doesn't work, I'm okay with that.  What else can we do with all of them but keep trying?

In other news, today is my seventh wedding anniversary.  I had such a great wedding, it was so much fun and I remember that right when we walked out of the church, I thought, we did it!  We got married!  I wasn't worried about anything and in fact, things that seemed like such a big deal to me THAT MORNING weren't anymore.  I remember thinking how STRESSFUL it all was, planning a wedding.  Good God.  I'd like to go back in time and smack that dumb girl in the face.  In a loving way, of course.  :)  But I am very lucky to be married to Mike, there is no one on Earth who I could do this with except him.  I am luckier than he is, for sure.

Tuesday

We have been having some good times here lately.  Not all great, but so much better than it has been going.  So of course I'm barely talking about it, ha!  I do feel like the wind has sort of been taken out of my blogging sails, with all this stupid crap at his school.  I am nervous about everything I say, but I'm trying to fight it.  Anthony seems to be doing well, he is working with Pam again, who he likes so much, and we are starting more OT and toilet training next week, so I am not going to complain.

I am eager and nervous and scared about toilet training.  He has been sitting on the potty and going, starting last week, which is amazing and promising.  The thing is whether or not we are going to be able to parlay that success into real success with training, but we'll just have to wait and see.  We are starting Intensive Toilet Training on Monday and we'll just have to see how it goes.  I only wish I weren't pregnant so I could be drinking a lot more, ha!

It's so weird, I can't even imagine it, not changing diapers for Anthony.  I know there are people who wear diapers their whole lives and I make no judgment on it, what can you do?  Some people's bladders and brains are more connected than others, big whoop.  But if it's a possibility for Anthony to do it, well, I'm excited about it.  I bought underwear for him today, cute boxer-briefs, and it was very exciting.  I am determined to not get my hopes up or get too far ahead of myself, so I'll just report the facts of the situation right now which is that we're starting training next week.  It's not going to be easy, he has to do a lot of sitting on the toilet and spend a lot of time in the bathroom, but ... who cares?  He'll have some of his favorite things in there, reinforcing things, and it's a bathroom, not an OUTHOUSE or something, so while it's not pleasant it's not the most miserable thing, either.

We all went to church again on Sunday and Anthony made it for about the first ten minutes and the last ten minutes, so ... not terrible.  I am hopeful we can stretch it out a little at both ends and do better.  The problem is, as usual, other people.  There's a lot of old people at our new church and I guess they are grumpy about the Big Hand of Death getting ready to snatch them, because there was some eye rolling and some general crappy feelings coming our way when Anthony was doing, well, nothing, just sitting backward in his seat, looking at them, etc.  We're going to try to sit up a little closer to the front where there are more families and try and blend a little better.

Today I went to pick him up at school and we went to get DQ after.  He likes an ice cream sandwich, so I got him one and got kids' cones for the girls.  We went home and they played in the driveway while I went to get the garbage cans and recycling bin from the end of the driveway.  We hung out there for a while and then I was trying to usher them back in, when Anthony went over to the basketball hoop, picked up the basketball and threw it toward the hoop.  !!!  What the hell?  I've never seen anything like it, Maria and Veronica were so happy - it has to be the most appropriate play he's ever done and we were all GOBSMACKED.  Then he came inside, like, no big whoop.  I guess the lesson there is that you can put the autism in the Hoosier but you can't take the Hoosier out of the autistic kid.  Or something.  Anyways, it was amazing.  Like Anthony.

July

We're flying through July, right? Tomorrow I am going to be 28 weeks pregnant, and Anthony has been back in school for two full weeks. It seems like his camp was a long time ago. He is doing well this week, I am happy to report. He is a sweet thing. Tonight I read on Facebook, a friend of mine posted about her son:

I wish I could snap my fingers and help (her son) communicate clearly and succinctly so everyone in the world could understand him and love him as much as we do.

I commented and said, I hear you, Mama, and I DO. I read this and got kind of sad but then I thought, welllll, I wish I could snap my fingers and do LOTS of things with regard to my kids. Maybe GOD felt like he wished HE could have snapped his fingers and solved the Sin Problem but he couldn't, he had to give up his only Son for all of us. Not to get too crazy here, but - well, I'm crazy, here, and this is what I think about. I wish it were easier but it's not. Anthony's therapist came out with him today and she said that he peed TWICE on the toilet today. Peed on the toilet! Anthony! To me, that is a miracle and if he just started doing it, three years ago, without any work or thought about it, well, it would not have been the same.

I know we have a long way to go. I know the future is .. murky. But I don't care. This week he had a good week and he's so cute and sweet and I couldn't love him more. That has to count for something, we all just love him so much and I know he can feel it, even if he doesn't always understand it. Our sweet Anthony. Our good boy.

Favorite Thing

Right now he loves those hangers. It's better than knives, which he used to favor, remember? He's not quite tall enough to reach the hangers in the downstairs closet, so he'll come and get me and when I prompt him, he'll say "hanger". It's not a bad thing, I suppose, to like to play with, but it's still a pain. He only likes the one hanger for a while and then he drops it and wants to get another one. Some of them, he has snapped the bottom in two, and he doesn't like that. So don't break them, I tell him, but he doesn't get it.

He had a pretty good week, I think he was happy to be back at school and back on a schedule. His sleep was much better. I think his days at school are going okay, too, so that's good. Today was his last day of swimming for a few weeks, they are finished with the summer sessions at the Y. It got a little screwy for us at the Y where he was going, they switched directors, etc., so maybe he can go to the WAVES program at another Y, we'll see.

We are trying to ignore his tantrums and it seems to be going well. It is very challenging to ignore such heartbreaking cries and yells, but we have to. Any reaction that we have is too much reaction and, I think, is confusing to him. I don't think he can help having the behavior, but I think we can help our reaction so that's what we have to do. It's so screwed up, I hate it, but we have to keep trying different things to make it better. If I had one wish to be granted, it would not be that he would sleep better, or that there was a magic 'go away autism' pill or whatever. If I had one wish to be granted, it would be that I could know more. That I could have more support and more help and more information. I think this and then I think I actually do have more information available to me, I just have to keep plugging away and trying different things until something works. There are no experts for us to count on, not in the way that we need to count on them. All we can do is keep cobbling together information and make something work for Anthony and try not to lose our damned minds in the process. So. That's what we're doing. That and buying more hangers, ha!

Church/Back to School

We all went to church again today.  It was rough, we got kind of lost AND the Mass was earlier than we thought so we were too late to get a seat in the back.  Mike took the girls in and I sat outside the church with Anthony, which was fine.  He is pretty good, actually.  Really, I had more trouble with the people WHO DO NOT HAVE AUTISM than with Anthony.  At one point, he wanted to lie down on the slate tile, which, who can blame him?  It's super cool and it's wicked hot today.  So I took him outside, between the indoor and outdoor doors, where there was slate but no people, and I could still hear the Mass.  TWO different families came in after NINE THIRTY!  For a NINE O'CLOCK MASS!  I mean, I thought I was safe, 30 minutes in, but noooooo.  Also the men that were singing were so loud, I wanted to cover MY ears and I don't have autism.  But he was still good.  We went in for communion and sat for a few with Mike and the girls and then Mike took him out.

He goes back to school tomorrow and I'm sure he'll be happy to see everyone and get back to his routine.  He is going to start working with Pam, who is one of his original therapists, tomorrow.  I'm excited, he loves her and had a lot of success with her.  I'm hoping all the hubbub is calmed down at his school and we can just move forward.  We start toilet training here in a few weeks.

He has had a rough, rough weekend.  I am just hopeful that it will get better.  I've been doing a lot of reading on tantrums and what to do and I am going to adjust our behavior a little bit in the hopes that Anthony adjusts his.  Something has to work, sometime.  I hear him so miserable and I think what else can I do?  I pray and pray and right now - not for nothing, that is not working.  It is not making his tantrums go away.  So I have to pray for something else and I guess that is the sense to go back to the drawing board and figure out what else I can try.  I just wish I wasn't so tired  all the time, I feel like if I had a little more energy, I could really get something going here.  Oh, that cocaine were legal and good for you.  And for little unborn babies.  Ha!  Kidding!

Fly High as a Bird

Anthony got the "Fly High as a Bird" award at camp today, because he likes to jump so high on the trampoline. They had a cute little ceremony where they gave out the awards and where each group sang a song.  Anthony was in NO MOOD and the sweet girl that works with him took him for a walk during the ceremony to calm him down.  Poor baby, he has had a rough week.  I have no pictures because he ... well he just didn't look very happy.

But overall it's been great, just yesterday and today were rough.  Yesterday they called me from camp, he was having a 'behavior' and I guess they just wanted to check and see if I had any strategies.  They said it had been going for almost 20 minutes and I told them that it's v. rare for it to go longer than 30 minutes, so call me back in 15 if he was still going.  But they never called.  There's only one boy there, and when I got there, he seemed SO worried and upset.  He said he hadn't ever seen anything like it, there was no trigger, they weren't bugging him to do anything, he wasn't sick, etc., etc., basically everything we've been thinking for 17 months.  He was so nice though - he said "we really love Anthony and even with the behavior today, he is still great!".  So that was sweet.  Anthony seemed so tired when I went to get him, he had woken up at 1:30 that morning, poor baby.  Then he was up late last night, on and on, just - the end of the week is the end of the week, whether he is in school or at camp or on the moon, I fear.

It's after 10:00 now and I think he's quiet.  I am praying, PRAYING as hard as I can that he will sleep tonight and have a good last day.  He goes to the zoo tomorrow, which I know he'll enjoy if he feels good.  It's funny - we took Maria to the zoo today and she was IMPOSSIBLE.   We had to leave because she was freaking out because we wouldn't let her take her clothes off at the splash park.  I had brought clothes for her to change into, but not a swimsuit because frankly it seemed like a little much.  Anyway, we just had to take her home, she was short circuiting everywhere.  It's so much easier to take from her, even though it's not pleasant, because she does seem to be in control of her behavior for the most part.  With Anthony, it's like he's having a seizure or something and you can't get mad at someone for that.  You can, I find, feel like your heart will break for them, but you don't feel mad, exactly.

We went to the splash park today after camp and he seemed happier the rest of the day.  I think that's all we can do at this stage - just find something he likes and do it as often as possible.  I just wish he liked to sleep more, ha!

Sunday

Boy, you'd think it wasn't the Lord's day, the way I go on and on about hating Sundays! But it was kind of a rough day. Today is actually worse, as Anthony hasn't been to camp or anywhere since Thursday and he is going mad. He keeps pulling Mike toward the door. Tomorrow, we keep telling him. Tomorrow you can go to camp! Mike is off this week so I feel much better than on a normal weekend, I don't have the usual dread.

Yesterday was a big day - Anthony went to church with us, we all went, for the first time ever. Anthony hasn't been to church at all since Maria's christening and we have never gone as a family. It went - not that bad. I told Mike I gave it a 6.5 and he gave it a 5. I think I was judging it on an overall perspective and he was judging it on how much he felt like he went to church. But I still think I am more right (not shocking). Because Mike is used to going either by himself or with Maria and I think LOTS of people who bring their kids to church, any kind of kids, don't really hear too much of the Mass. But we are there and that's what counts. Also, I hate the church that we go to, so I don't feel like I'm missing out on much.

Another thing that happened yesterday was that it was the first time I saw another kid point and say something about Anthony. Unfortunately for that kid, I was right there and heard it and I talked to him. Unfortunately for ME, the kid was actually very sweet and he cried and apologized, so then I CRIED because I am a loon, and it was a big fat mess. Here's what happened. A friend of mine told me about this splash park right near us, and it was one billion degrees yesterday, and Anthony seemed to have so much fun at the zoo splash park yesterday, I thought we should try it. So we finally found it, there is construction underway on the same block as the park, and it's in a HORRIBLE neighborhood, but then poof! there it is, this really nice splash park appears out of nowhere. Anthony really liked it, he was having so much fun, and Maria kept running around yelling Best Day Ever! and it was just great. So Anthony was playing and some kid, about his age, pointed at him and said to a girl with him, "look, that kid is wearing a swim diaper". I said, yes, he is, would you like to talk about why? Or do you just want to point at him? The kid looked TERRIFIED and ran to his mother, who was sitting over on the side. I saw her hugging him and I saw his shoulders shaking from crying and I ... I felt terrible. I tried to tell myself that Anthony didn't care, because he absolutely does NOT, he didn't hear that kid and he wouldn't have cared if he DID hear him, but still. Waaah. I am a crier and I am pregnant and ... I'm just a wreck, I was a wreck. So anyways, then the kid came over and he said "I'm very sorry I said that about your son". I said, that's okay, thank you for apologizing. I couldn't say anything else, I mean, seriously, I may have frightened this kid, I was getting VERY upset. I was thinking about toilet training and how I want it to work, I feel I owe it to Anthony to provide him with this training. I started thinking about how this kid was pretty young, and how he's only going to get meaner as he gets older and what in the WORLD is going to happen to Anthony? But - for right then, this poor six year old was being very brave and apologizing to me and I just didn't want to scar him forever. So that's all I said was thank you and it's okay. Then I ran to get Veronica, who wanted NOTHING to do with the water and was in the playground area of the park.

Then the MOTHER came over - honest to God, I didn't think I was going to make it. I am not trying to be dramatic here, but man, I still hadn't gotten it together from the original incident. So anyway, she of course was very nice and she said she was sorry her son said that, but he just had never seen it before. She said thank you for saying something to him because it was a great teachable moment for us. A small, mean part of me wanted to say, I'm SO happy that my son has autism and is still in a swim diaper at six so you could teach YOUR son something, but - let's face it, that's just mean. There was nothing wrong how anyone was reacting to this situation except me and I am a known loon. So I said, thanks for having him apologize, he was very sweet. And that was that! Meanwhile, everyone else was having a great time so I just tried to shake it off and we continued to play.

I just - I know it's just the beginning, right? People can be real jerkstores. I don't need to learn that, so that's not my teachable moment for the day. What was, maybe, is that it's proof to me that we are starting this training at just the right time. And that even if people have doubts, I have to push on and make something work for Anthony. I have been doing a lot of reading on this intensive toilet training and there are several pre-requisites for kids that are going to do it and even though Anthony doesn't have all of them, he has several, and this training has been successful with many, MANY children who have met even less of the pre-reqs than Anthony has. So I am just not going to worry about what any naysayers may say. We are going to make this work, in one way or another, even if it kills me.

Day Off

So he has off from camp today and off on Monday, which I didn't realize.  I guess normally they have off on Fridays, the staff does something, but because they have off on Monday for the holiday, next Friday they'll go.  Next week he goes back to the horse place, where he may or may not have time to try to ride a horse again, and also to the Zoo.

Today was kind of a mess, Anthony-wise.  He had a good, sleepy night, although when we went in to get him this morning he was completely naked.  I even went in and checked him about 11:00 but it was dark and he was under his blanket, so I guess I didn't see.  I honestly don't know how we will ever get anyone toilet trained for night time, Maria, Anthony, any of them.  Ha, I am toilet trained but I do have to go to the bathroom in the night, ha!  Maybe we should ALL start wearing diapers to bed and we'd all sleep better.

Anyway, he got up and we hung around for a while but there is a point, when everyone is home with me, where they just are too much for me.  Anthony is pulling the food out of the cabinets and Maria is climbing up on something else and Veronica is outside near the pool and I just - give up!  So we went to Dunkin Donuts and drove through the creeeepiest drive-thru ever.  It's behind the building, it's so narrow you'd never get out if someone sprung on you, it's awful.  But it would be better to be held up at gunpoint than to try and take the three of them in there so I do it.  Anyways, we got donuts and bagels and went to my parents' house.  We had a fun time, played outside, etc., and we stayed for a while.  Mike found out he was getting home early, so we went home to meet him.

He wasn't home when we got home so we hung out, of course, in the drive through.  Oy, we are a MESS.  Maria's clothes got wet at my parents' house so she was in underwear and sandals.  Anthony had taken off his shirt, so he was in jean shorts and that was it and Veronica was just in her shirt, as her pants got wet earlier.  And SO many neighbors of mine walk by, hi!  Hello!, they say, and I say, all tense, "HI!", trying to sound like I don't have three naked kids in the FRONT YARD and they are not all at the far ends of the property line, torturing me.

Anyways, then we had lunch, Veronica had fallen asleep on the way home so no nap for anyone, and then 42 hours passed between noon and six.  Anthony had a couple of minor meltdowns but mostly they are for a reason here lately.  He's hungry, he's dirty, he wants to take his clothes off and rub up against me and I DON'T want him to, etc.  Ugh, sometimes he wants to rub his belly on my back and he does and Veronica will come over and sort of pet my leg while he's doing that, and I think about adding a baby to the mix and NURSING the baby while this is going on and I think I hope this is one tough baby.  Ha!

Hair Don't

I'm afraid we're getting to a decision-making time with Anthony's hair. It's getting so long. It's better this year than last, because they are doing a hairbrushing program at Anthony's school and it never gets knotted or anything like it used to. Also my sister gave him an awesomely awesome satin bedding set and that pillowcase really helps. But it is getting long, right?

I am just trying to keep my mind off the fact that he is doing his horseback riding thing today at camp. I am so, so nervous about it. It's just like being a regular, Mom, being a mom of someone with autism. Like it can suck more, and it can be better, but mostly it is the same. He is off to camp for the first time and I think about him all day and I talk to him about it at night and I am so nervous and so hopeful that it will work out. Only instead of hoping he'll meet a friend or something, I am hoping he doesn't get too freaked out when they put him on a horse. I just hope he isn't scared, I hope he does well, I hope I hope I hope.

Day Three

Camp is going very well, he seems to be having a good time.  He doesn't eat much when he's there - he is eating more every day but the first day I think he ate almost nothing!  The second day I asked Mike to talk to them about how he was eating and he did but I think they are sitting with him and eating, he just must be ... nervous or something there and anyway, he hasn't been eating much but animal crackers, ha!

He hasn't really had any 'behaviors' or 'tantrums' or whatever you want to call it since Monday.  This is perplexing because - well, I mean, if he wants to go to camp every day of his life, that's not going to work out, is it?  We all would like to hang out all day and jump around whenever we want and eat animal crackers, am I right?  We are just grateful that he is doing well, I am trying not to think too much about it.

Tomorrow he has horseback riding.  I hope and pray it works out.  Hippotherapy can be so great for kids with autism, I ... well, it would be nice if he likes it, is all.  I'm just going to take it one step at a time and hope he likes it and that he gets to DO it.

He is funny, he is used to getting up and leaving, and now he's been going to bed pretty early this week and getting up early and then he has all this TIME to sit around in the morning and he doesn't like it!  He is always pulling on Mike's hand, toward the door.  This morning Mike took him to get a bagel before camp, just to get him out of the house, ha!

So if you are thinking of him this week or praying that he does well, it's working.  We are very happy that it's gone this well so far.  Ha, as I say this he is sort of yelling in his room but I think he's probably just tired.

Happy Camper

He did really well today!  It wasn't a normal day because it stormed a lot this morning, so they told Mike they would just do a lot of Gross Motor Room stuff, which I'm sure was fine with Anthony.  He was happy to see me when I went to get him, but not too frantic, he seemed good.  He had a good afternoon and is still up, here at almost 10:00 but overall he seems happy and content.  Which is just like I like him.  :)

Incredible

Anthony's therapist Kristi sent me this picture. She took it when they went on an outing this week, they were at a park and she said what a great time he had. This picture is amazing, to me, I can't stop looking at it. When I look at him and I know that he can be happy, that he can be at peace and laughing, I have to keep trying to do everything in my power to keep him that way, at least MOST of the time.

He had swimming today and it's going well, Mike's been taking him so I only have his word to go by, but he is pretty trustworthy, ha! He starts his camp this week, I am a little nervous but mostly excited. I keep talking to him about it but even if he did listen to me, he has no reference, he's never done anything like this before. I just hope it goes well, I hope he has good weather for it and I hope above all else that he likes this horseback riding that he'll be doing. I am long past expecting us to have a Rosebud-type epiphany where everything is just poof! all better, but I hope that hippotherapy is something that could be beneficial to Anthony and that maybe if he likes it, we could do it again. We'll see. You never know, as my nephew Parker used to say. You never know.

Sleepy

Ooh he was tired this morning! He fell asleep super late last night, then he was up crying at 5:30, and then fell back to sleep and then wanted NO part of getting dressed and ready at 7:45. Mike carried him downstairs and it was like carrying a big, tall sack of potatoes or something. He is feeling better, obviously, if he could stay up all night like that, I guess. He had a field trip today to a park and it's a nice day so hopefully that went well. Otherwise, no news. He starts camp next week, his toilet training has been pushed back to start on 7/25 instead of 7/11, which sucks, but what can you do? I'm eager to get started so that seems far away, but it will probaby be here before we know it.

Sick

Ugh, this poor baby was sick this weekend, and into yesterday.  We knew something was weird when he got right into bed after his bath, pulled up his covers, and went to sleep.  Mike and I were looking at each other, like what in the WHO now?  But he was very plucky, even though he didn't feel good.  He just slept and rested and would come downstairs every now and again and eat, and then right back up.  He probably didn't have the energy for any real protests.  He is always sweet, but never sweeter than when he is sick.

BUT he's better today and back at school and since I haven't heard anything, I'm assuming he's doing fine.  Speaking of school, I guess I am not going to talk about it anymore on this blog.  It's hard, because I've been documenting his life for six years on this blog, but I am seeing some verrrry strange searches that lead people here, like one said "anthony autism blog little star center".  Um, I can't imagine, who could that be? :)  I started Anthony's blog so that my friends and family could see what our lives are like, so that my family that is far away could see the kids' pictures and feel like they weren't so far away.  It's become important to me to say what's going on in our lives, in Anthony's life, because I lose perspective when I am in it and don't have anyone to talk to.  But I'm afraid it's going to be used against me, against Anthony, and I can't risk it.  I am thinking about just moving the blog to a private list, but I honestly don't have the time to enter all the emails of people who look at it, etc.  So I'll just not say anything about what's going on with Anthony at school, or at least try to keep my opinions out of it.  This is challenging for me, as you can imagine, ha!

Saturday

Anthony is off to swimming, his second Saturday.  I think it's better to go on Saturdays.  He has been waking up kind of rough lately, and it's nice to have somewhere to go, especially somewhere he really likes going.

We had a tough, TOUGH week.  I wish I could report better news on his blog, but I have to go with the truth.  He woke up at 4:00, 3:00, 2:00, 11:00 (pm) and some other ridiculous time this week, and he's been mid-tantrum when he wakes up, so it's very upsetting to him and takes him a long time to calm down.  Mike has been working, the girls have had their regular schedule, so we are both really tired and finding it hard to cope with our regular lives.  Some verrrrry disappointing things have been having at Anthony's school, too, so it's been a very tough week.

BUT he went to the splash park yesterday and I heard he had a very good time.  I was worried he wouldn't be able to go because there was a chance of rain, but it stayed nice and off they went.  Also, his afternoons have been okay.  We got his swing installed and although it's not perfect yet, he really likes it and that makes us all happy.  I'm trying to think of other positives.  His hair is looking excellent.

The things that have gone down this week at his school have been painful, for sure, but there is a certain freedom in finding out who people really are.  Mike and I have been sort of blindly going along for a while here, even though we've been unhappy with this or that, we have tried to maintain some sort of status quo for Anthony and hoped that things would get better.  But if we're honest, we have to say that it's not really getting better for Anthony.  I look back through the last year and it's been tantrum, tantrum, lack of sleep, tantrum, misery, tantrum, tantrum.  That's not making a judgment on it, it's just how it's been.   I am at a point where I am almost *afraid* of him, I am always wondering and guessing how he's going to be.  I just - I don't think it should be like that, for him.  And I think we need to have Anthony surrounded by people who don't think it should be like that either.  Who don't just say to me, "that must be so awful", or "as the parent, it must be really hard to see him like that".  Um, of course it's awful for us, but you know who else it's awful for?  Anthony.  As his parents, we have to fight and get him the best care and therapy that we can get him.  We are here to take care of Anthony and anyone who is helping us but failing - well, we just can't have it.

Anthony has *autism*, this is the fact.  I can't expect him to behave any other way than the way that he behaves.  I do, however, hold supposed experts to higher standards.  I am sick of putting so much of this on me and Mike and especially on Anthony.  We're just not going to do it anymore.  We're going to demand better help for him and if we can't get it where he goes to school now, we'll just figure something else out.  I'm disappointed in how we've been treated, but in a way I feel very free and able to help Anthony in a way that I haven't in a long time, if ever.

So we're going to plug away and try and continue to get Anthony the best treatment we can.  He has one more week of school and then he is off for two weeks for camp, which I think will go really well.  Then he starts back at school and they are going to start toilet training in earnest.  So I'm bullish for the future, once again, but I'm actually LOOKING at the future in an honest way.  I'm a smarter and wiser mom, or something.

Sleep and Tantrums

One thing I have been grateful for (seriously, there's just the ONE thing, in my whole life, ha!) is that although Anthony has tantrums, and although he can be a bad sleeper, he would rarely have a tantrum when he should be sleeping.

That has changed here lately.  I am praying and praying and hoping and reading and working and trying to make it better for him and instead, it's getting worse.  A few weeks ago, he started waking up in a tantrum, around 7:00 or whatever.  So it stunk but at least we had stuff to do, we got up and got him dressed and he went to school.  This week, we are reaching a new low.  Sunday night he went to sleep around 10, I guess, and woke up at 4, which seemed super early to me since Mike and I stayed up to watch The Killing until 11.  He had a giant meltdown, was so upset, for almost an hour and then he calmed down but was awake for the day.  Monday morning he woke up at 3, same way, upset and then up for the day.  So when he started screaming this morning, and I looked at the clock and it was TWO, I was surprised but not really.  I have never had this experience before - where every time I think it will get better, where I think it can't possibly get worse, it does.  And it does with a BANG.

He did go back to sleep at some point this morning but he got upset on the way to school.  It's like there's more and more time where he is having a tantrum and less time where he is just happy.  It's so bizarre and it's beyond depressing.  It's also worrisome to me because I am trying to get some rest, because I am having a BABY who I am supposed to be taking care of.  I just - I don't know what the answer is, here.  I am thinking that if I had my own house, or apartment, that might be a good start.

BUT here's a picture!  Anthony has a new(ish) therapist, Kristi, and she is with him on MWF mornings, so she is going to be going with him on most of his outings this summer.  I asked her if I could post this picture, it's so gorgeous, such a great picture, and Anthony really looks like he's having fun, right?  I wish I could impose it on the inside of my eyelids so when I closed my eyes I could always see him so happy.

Six

So Anthony was six yesterday! He had a better day yesterday than he had in a while, largely because he went to sleep the night before at a decent hour. The two nights before that, Mike and I inadvertently woke him up and then he had large, amazing tantrums for a LONG time before he fell asleep. It was around midnight both nights, which is way too late, plus it's just an awful, horrible way to go to sleep. For him and for us! He had a good morning at school, he had what I guess was a pretty bad upset right when he got home for therapy, and then we had a pretty good afternoon and evening. He doesn't really like sweets so we tried an ice cream cake, an oreo one, but everyone liked it but Anthony. More for us, we said, ha! We bought him a swing for his birthday, actually my parents and Laura went in on it too. I'm going to go to the hardware store this weekend and figure some way to hang it. I hope he likes it but I bet he will. The thing to do now is to keep it away from his sisters.

I feel bad because I honestly can't be like, "it's all gone so fast!" and "where has my baby gone?". I mean, I have been here for all six of these years and they felt like six years! I don't have whatever gene there is that makes a person wax poetic about what can be very long days and nights. But it does surprise me sometimes, when we put a pair of shorts on him, and these giant long legs stick out of it and I think 'whose legs are those?'. Who is this little man? And why is his hair so long? But mostly I can still see that little baby in there, I will always think of him as that little baby, when it was just him and me for so long. I think of us going for walks and just being together, the two of us. I know that little baby is still in there - ha, I'll probably be like that old woman in that I'll Love Your Forever, the one who drives across town and gets the ladder and climbs up into her son's house to rock him like a baby. Anyways, happy birthday Anthony! We couldn't love you more and we look forward to the coming year. And maybe a few less tantrums. :)

Friday

Plodding on. It's just a few weeks until Anthony starts his summer camp. I saw this nice piece about Easter Seals Crossroads, who run the camp that he'll be going to, so that was nice. He had a pretty good week, overall. He has been upset every day for some amount of time, but really, it's like the new normal. I mean, it's been well over a year, I guess we should probably just accept that this is the way that it is. I'm too tired to do anything else or try anything else on my own.

We are going to start working on toilet training, at least at school, next month. I think that there are definite signs that he is ready. I want to talk to a friend of mine's sister in law. Her son has autism and she toilet trained him so I am looking for information if anyone has any! I do feel like Anthony is ready, but I just don't know how ready. I mean, it has to mean something that he is always taking off his diaper, right? Taking it off and peeing? I hope so. I feel more confident now that Maria is trained, I think maybe it's not me. Also, I really don't want Anthony to be an adult in diapers. I really don't. I feel like I have to do this for him. I mean - they would all be peeing freely like dogs or something if I let them, but I am here to teach them how to live in the world and that includes Anthony. Sometimes I get the sense that people think, well, we'll try it, but I want to do more than that. I want to try one thing with Anthony and if it doesn't work, I want to try something else. I know how smart he is and I know he is all in there somewhere. I just have to keep prying away to find out how to get at him.

In gorgeous news, look! Isn't he so cute and grown up looking! Sheesh! Six years old next Friday! I feel every single day of those six years that's gone by, so you won't find any b.s. about boo hoo hoo, it seems like yesterday, and where has my baby gone? type stuff here. But I am ... I feel so happy that we've made it six years! Here's to six more! And repeat, repeat, repeat, ad nauseum.

Saturday

Well, we made it through another week. I wouldn't say he had a great week but actually I am sick of grading his life, so I'll just say we made it through another week. Anthony is off from school on Monday AND he has no swimming on Thursday so it should be interesting. It's hard to believe summer is starting, especially considering this stupidly cold and rainy weather we've had. It's cold and wet today but it's supposed to be 90 tomorrow.

In the time I've started this, Anthony has really been going crazy with the tantrums. It's - it's so difficult, not even 11:00 in the morning and already everybody is crying about something. I am trying, trying to not end every freaking entry on this blog with such BAD NEWS but .. well there is nothing nice to say, really. He has a lot of cute clothes. I bought him new pajamas. His hair looks great. He likes to run and play chase with Maria. He was sweet and happy when he woke up this morning. He is strong and brave.

Oreos

Oh this child and these cookies.  This is *after* he's eaten what he wants.  Here's what happens:  he turns the corner cabinet around so he can use the shelves to climb up on the counter, then he stands on the counter and gets the oreos down.  He sits down and opens each cookie and takes out most of the creamy filling, and repeat repeat repeat until he's caught.  He was only alone in the kitchen for like five minutes!  We go through a lot of Oreos.  

I try and make him eat the ones that he won't - after all, it's not like it's LIVER or something.  I watch Amy make him eat that whole cookie before she gives him another one, but we are a little looser here, especially around dinner time, when we are messing with the girls, too.  

He is doing well, we've had some late nights and early mornings but overall he's doing fine.  I am trying to appreciate the good times with Anthony so I can think of them when he's having a hard time.  It's working, I think.  

Same Kid

This is the same kid who was yelling this morning, yelling this afternoon. He is truly this happy when he's happy and truly that sad and mad when he's sad and mad. It's ... crazy, is what it is. It's good, though. Because even when it gets really hard and he gets really sad and then *I* get really sad, there's this boy. He's always in there, smiling away.

400 Days

It's been about 400 days or so, 400 days of tantrums every day.  It's been like ... 60 Sundays, Sundays full of - the best way I can describe it is like rolling storms, rolling storms of tantrums, crying and screaming and crying, and flopping to the floor and crying and self-injurious behavior, on and on, it never stops.  We have had maybe ... five days off from the last 400?  That's not enough.  Some times I think we are not going to be able to do it.  Sometimes I think about having a little baby here and this all going on and I just - I know I can't do it.  I don't know what we're going to do.

I try to think, well, we are working on it.  We are seeing improvement.  But that's a lie.  No one knows why he is having these tantrums, and even though he is pointing at the iPad and putting on Signing Time when he wants it, he is still having these tantrums.  Even though the weather is warmer and he can go outside, he is still having these tantrums.  Even though everything, he is still having these tantrums.  No one can help us and no one knows what to do.  Sometimes, just to amuse myself, while he's screaming, I say, "Anthony, what do you want?  What is the function of this behavior?  Let me gather some data and make it better".  That's what we're doing at his school.  We are trying to figure out the FUNCTION of the BEHAVIOR. We are GATHERING data and making CHARTS.  We don't BELIEVE in SENSORY ISSUES, we believe in BEHAVIOR.  But when I ask Anthony about his behavior, strangely, he doesn't answer.  He doesn't know and I don't know and no one knows.  So.  I am trying to think of a way to put a good spin on this but there really isn't a way.  It just sucks and it's sucked for around 400 days and I see no reason why there won't be 400 more and 400 more and 400 more, the end.

Moving

He is not much of a layer-arounder, I'll say that. He has been walking the backyard for a while now. He went to bed early last night and rose EARLY this morning, before 5:00 I guess. He was unhappy at first, I went in and covered him up and rubbed his back and he calmed down, but he didn't go to sleep, just knocked around in his room until Mike got him. He's had a few episodes already but right now he's good. Lord, he is a pain. If he wants apple juice, he gets up on the counter and gets the pitcher, then sloshes it in to wherever I'm sitting, juice flying everywhere. Then he'll have the TINIEST sip, 1/100th of what has already spilled, and - just ugh, it's apple juice, it's so sticky and gross. Anyways, he's fine. He had a good week, overall, I shouldn't complain.

Yesterday for home therapy we hung out for a while and then the girls woke up and we went to a garage sale. My friend was selling a double stroller and I want one so we all piled in the van in search of the sale. At first we went to the wrong house, but finally we found it. There was a dog at the second sale, and Amy patiently walked Anthony up the driveway so he could get near the dog. He's doing pretty well with it - he still doesn't like it and he will never hug you tighter than when there is a dog around, but mostly he was really brave about it. We went to McD's after and got some chicken and fries and a shake for Anthony and he did great, just great. Apparently, he got so mad about a lack of cookies last night that he kicked off a cabinet door in the kitchen, but except for THAT, he had a good day yesterday.

He is so much more tense than I would like to see him, I wish that he was my simple little happy boy but he's not, right now. I mean, he still is that boy, he's still in there, but he's just super grumpy sometimes. I am, too, and I used to be much nicer, so I know how he feels. Ha, and probably I know how my mother feels too!

Wednesday

He's been upstairs for two minutes and he's crying already.  Maybe he's mad that he had to go to bed?  Sometimes I have to put him to bed because I can't take him messing with stuff anymore.  Lately he has been really into our large spoons.  He takes them out of the drawer, plays with them a little, and then drops them wherever he is.  It's crazy making!  He's been having good days at school, he has a new therapist and it seems to be going well.  I never know who at his school reads this blog so I just pretend nobody does and it keeps me relatively honest.  That said, I like her too.  She's lived and worked in NYC, which I of course like.  :)

I am worried that he needs more OT, we are working on a plan and I hope it comes together.  I know his sensory issues are responsible for so much of his ... other issues, I am trying to make something work.  I am going to get him a swing, I should just order it tonight.  I have a cold and have for the last ... several months, it feels like, so I am dragging.  I can't ever do anything on the computer, or at a desk, while the girls are up and today when they were napping I exercised, so I feel like I've accomplished nothing.

He is crying and crying.  I guess I'll go up soon.  I hate to hear him cry, especially right after he goes up!  Tonight he said "good night" and "I you" when I prompted him, maybe he's mad about that.  Maybe he takes it back?

I was reading some of Temple Grandin's book and in it, she says how if there were a way she could flip a switch and not have autism anymore, she wouldn't do it.  When I read that, I thought, that's why I have such a problem with the talk about magic pills and how we'd take away our kids' autism if we could.  It's not mine to take away, I figure.  It's Anthony's, and when I talk about what I would do or not do for him with regard to taking his autism away, I'm focusing more on me than on him and I don't think that helps him or me.  BUT I wish I could take all of his pain away, all of his frustration and anger and tears.  But doesn't that just make me a mother?  Doesn't everyone wish that they could take away their children's pain and fears?  We can't, though.  I can't take away Maria's pain that she gets when I don't let her do whatever she wants.  I have to teach her how to get through life, even a life in which she can't make everyone bend to her will.  It's the exact same with Anthony, only more ... intense.

I am going to go see if maybe he is hungry.  How I wish these fools would eat at dinnertime and not leave all their pecking for right before bed, after we've brushed their teeth.

Just you Wait

I've been reading blog entries lately about people who say "Just wait!" about whatever stage you're in with your baby, and warning you about how much WORSE it will get.  Like when you're pregnant, maybe you'll say you're tired.  And they'll say "Ha!  You think you're tired NOW?  Just WAIT - you don't even KNOW TIRED!".  Or maybe you've had a fussy-poo baby, and you say, "well, we had a very rough time with our baby, but we learned some coping strategies, for us and for the baby, and now things are better".  And they say "Ha!  Just wait until the baby starts TEETHING!  Just wait!  You don't even KNOW FUSSY!".

First of all, it all makes me think of this excellent song. Secondly, I am in shock that people can be such giant, giant jerkstores.  I think about when I was pregnant with Anthony, and people used to tell me that all the time.  Alllll the time.  I did have some trouble sleeping and I would mention that I was tired and some people would tell me that it was to practice for when I had the baby, so I knew what it was like to be so tired.  And I would think, can you hear the words that you're saying?  Why would I need practice to be TIRED?  I have been out until 3:00 in the morning and then gotten back to work at 7:00, FOUR HOURS LATER.  I know what it's like to be tired, you big dummy.  WHY do people feel like they have to TALK so much?

When Anthony was so fussy and crazy when he was small, and I never slept for that first two months or whatever, it was obviously hard.  I never once thought, thank God I practiced being so tired!  Phew!  I really know how to do THIS!  No, I thought "I wish I could have slept better during March, April and May so that I wasn't so bitter about missing so much MORE sleep now".  My friend Susie, a girl I've known since we were fifteen, called me when Anthony was days old and I didn't take the call.  I didn't want to talk to anyone.  I felt SO dumb, so unprepared, so miserable.  I couldn't fake my way through a conversation with such an old friend.  So after a few tries, she left a message and said, pretending to be my voice mail message, "Hi, this is Joanne, I can't come to the phone because I'm so tired I can't see, quit calling me!".  I called her back and we chatted and she said "I wish I could have told you about the tired, but you can't tell anyone".  It made immediate sense to me, I wouldn't have believed her.  How do you explain that to someone?  How do you say "you're going to have a baby and maybe you'll be in labor for 24 hours and then you'll have a c-section and you'll throw up and be sick and the nurses will be so weird and every single person that comes in your hospital room (and there will be thousands) will have different advice for you and you'll be so confused and sad that you won't be able to see.  Then you'll go home and the baby will start screaming and he won't stop, it will feel like, for several months.  Good luck!  Happy baby shower!?  Ha!

My long-winded point is this - there is no way I could have been prepared for motherhood, but there is REALLY no way that I could have been ready, been prepared, to be Anthony's mother.  I couldn't be his mother until I was his mother, if that makes any sense.  It's a very personal thing, to be someone's mother, especially someone like Anthony.  I had no idea what was in store for us - I still don't!  So it doesn't do any good if anyone says "just wait!" to me, about anything.  What are my options?  To not wait?  To ... fast forward?  To quit?  If we have a good day with Anthony, a good HOUR, I'll take it.  And if the next hour or day or year sucks, I'll take that too.  So if you're tempted to say "just wait!" to someone who is talking about a rough patch with their baby, just shut up.  Think and take a deep breath and shut up.  Go get a journal and wtire about how smart you are and how much you know and leave everybody alone.  Because it's not kind and it's not helpful and there is no point.

Monday

I stole this list, I figured it would be a good way to report on the happenings around here, regarding Anthony.

Outside my window…  it is sunny, but it's supposed to (sigh) rain later.  It's also supposed to be in the EIGHTIES tomorrow and Wednesday, but of course colder and rainy this weekend for Veronica's birthday. 

I am thinking…  about Anthony, at 3:00 this morning.  Mike and I went to sleep around 11:00 and he was still making noise so we couldn't go in and turn off his light.  Mike had changed his dirty diaper when we went up, around 10:00, and he had been pretty good all night, so I wasn't worried he'd be upset, I just hate to leave his light on all night.  Anyways, I went in at 3:00, when I woke up, and he greeted me at the door!  I almost fell over from shock.  I don't think he was awake for long, he looked so sleepy.  I think maybe he fell out of bed and was wandering around and maybe that's what woke me?  I covered him up and out he went.  He slept until we woke him at 7:30 this morning and was really sweet all morning.  

I am thankful for…  flexibility.  They are adding in some OT work for Anthony at school, twenty minutes at the beginning of every shift, so twice a day, and I am hopeful it helps him.  He had a pretty bad day yesterday, woke up sad and sort of stayed in and out of it all day.  

From the kitchen… I have no idea what we're having for dinner, it's a bad habit but I am sick of making dinner.  I swear, if I never had to cook again it would be too soon.  I think it's worse now because no one eats what I cook except for me and Mike.  I know that I should make them eat what we are eating but they would seriously not eat if I did that.  Veronica is pretty good and she'll try everything but that's it, she tries a bite or two.  I have to get more organized about it - maybe this fall?  Ha ha ha boo hoo that's a joke.  

I am wearing…  a black maternity top and yoga pants.  I am in need of maternity clothes earlier and earlier with each pregnancy.  

I am creating… a party for Veronica this week.  I ordered cupcakes but I have to get paper plates and napkins, clean, get some dips, etc.  

I am going… to go to sleep early tonight.  I woke up around 3:00 and never really went back, in and out of sleep until I got up at 6:15 to go walking with my friend Vicki.  I'm always glad to get exercise out of the way but I am SAD that the girls fell asleep on the way home because that means no nap for any of us this afternoon.  I am BEAT.

I am reading… Something Borrowed, recommended by some of my friends on Twitter.  I'm enjoying it, it's ... well it's a lot simpler than Something Something Goon Squad (I can't remember the title, so tired) which, as my sister said, you needed a CAST LIST to read.  

I am hoping… that we have a breakthrough with Anthony here soon.  I really want him to stop having these tantrums.  I am seriously PRAYING on it here lately.  I'm sick of them and I also don't think they represent who he is.  

I am hearing… Maria ask me to play puzzle with her.  Since she can't read and doesn't know the blog address here, I'll just say that NO I DO NOT WANT TO PLAY PUZZLE.  NOOOOOOO.  I'll probably do it anyways.  

Around the house… there is a giant mess.  I clean and clean and do laundry and clean some more and it's just - messy.  I'm trying.  I have to get rid of a bunch of clothes that don't fit (me, the kids) and get some summer stuff pulled out (the kids) but the thought of it is very daunting.  

One of my favorite things…  It hardly ever happens, but one of my favorite things is when Anthony has a good day but I don't realize it til the end of the day.  It's such a sweet surprise.  

A few plans for the rest of the week… I am going for a checkup with my OB tomorrow, Maria has her last day of preschool on Wednesday, Anthony has swimming on Thursday, and Veronica will be two on Saturday.  So it's a big week, kind of.  

Here is a picture for thought I am sharing…

 Lately I've been reading stuff on the internet about 'if there was a magic pill that your child could take and it meant they didn't have autism, would you give it to them?'  I find it so offensive, on so many levels.  I mean, there isn't such a pill.  But I suppose if there were AND if I could be guaranteed that Anthony would be the same person, MY person, I guess I would.  I want him to not have any pain any more, I wish he were able to talk better, I wish his future were clearer and better, I blah blah blah want want want wish wish wish.  But this is who he is, I mean, I believe in God, and I believe that Anthony is who he is and I should be happy with it, right?  Temple Grandin said, when we saw her speak last week, that autism is buried so deep in the dna and genetics that it will never just be poof! cured.  So is it a big part of who he is?  I don't know.  It think it's a dumb question and I hate it.  I want to love Anthony just how he is and also want the best for him and also want people to not be jerks and not insure some people and not bully people and to accept that some people are different and that neuro-diversity is good for us all.   There's no pill that can do all that.  

Friday

Anthony has really been enjoying the driveway lately. He's been very good about staying in it, and not running into the neighbor's yard, which was a problem for both him and Veronica but it's better. He had a good week, although he's tired by now. His speech therapist said that he cried this morning, then fell asleep for 5 minutes, woke up and was ready to work. Ha! That's all he needs, five minutes. I wish it were that way for me!

Well

I feel bad, though, taking a break. I have these pictures of him and I don't want to miss anything, so I am going to just post them, I guess. He is doing fine, his hair is as awesome as ever, anyway. They are trying to do more sensory input moves for him at his school, we are going to see if that helps. So far, things are just the same. He loves his iPad and loves especially the Signing Time app that I bought for it. We went to a park last Saturday and he loved this one swing that they have, so I am looking for one like that. We are marching right along, things are the same as ever. I went in to get him dressed this morning and he was sleeping there, so beautiful and sweet and so, so peaceful, I just couldn't do it, I couldn't wake him up. I am so afraid that if I wake him he's going to scream and cry, so I thought I'd give him a few more minutes of peace.