Sunday, July 31, 2011

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, July 26, 2011


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.

Thursday, July 21, 2011


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.

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Saturday, July 16, 2011

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!

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Sunday, July 10, 2011

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!

Thursday, July 07, 2011

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!

Monday, July 04, 2011


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.

Friday, July 01, 2011

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!