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.

We are on a Break

I am going to take a break from updating this blog.  Every day I think of updating it and every day it's so depressing that I just can't do it anymore.  If you want updates, early in the morning and around 8:00 at night, just picture screaming and crying and flopping around.  Picture yourself hearing the screaming and crying and seeing the flopping around and not being able to do anything about it.  Feel super helpless and sad and as if these tantrums, and the inability to do anything about them is sapping your will to live.  Then it will be just like reading the blog, only without the cute pictures.

Friday

For us, there is not a worse day than Friday, which is funny because it used to be my favorite day of the week.  When I was in New York, we'd make plans all day and then do something in the city for happy hour and then wind our way back to Hoboken, nowhere to go, nowhere to be.  Today:

• we woke up before 6:00 to the strains of Anthony having his fifth horrible wake-up tantrum in a row.  Mike went in, then I went in, then we both left, then the girls woke up, then he tantrummed some more, and then he came downstairs and lay on the couch, just fine.  
• took the girls to get some donut holes for my friend Emily's house.  I pulled out in front of this car, that was waaaaay behind me and I tried to quickly get up to the speed limit before the car was close to me, and succeeded.  But the LOON behind me was riding my ass, waving at me, all mad.   Of course, they turned left where I did, so I had another mile or two of them riding behind me.  And of course, I had to stop at the bakery right off of the road, and I was afraid they were going to pull behind me.  If I was by myself, I would WELCOME that fight.  I swear to God, I am a loose cannon these days!  But I was with the girls so instead of looking for a fight, I dialed "911" and just made sure the woman didn't follow me.  She didn't.  We got the donut holes and I got some milk because I didn't have enough and I felt like even though it was a fast day, I should keep eating something because sometimes I feel a little sick if I don't keep eating.  But I forgot the milk and I had to put the girls in the van, then drive up and run in and get the milk.  The IDIOT behind the counter said, "was that your milk?" when I came in and I thought, bitch, please.  You KNOW that was my milk, you just CHARGED me for it.  There are like SIX of them behind the counter, I was obviously with two little kids, it would have killed you to come after me and say "hey!  You forgot your milk!".  So.  Annoyed.
• I had a nice time at Emily's and the girls were good and seemed to have fun, so that was great, although Maria did "pee, just a little, on her underwear".  Maria has entered some phase of toilet training where she thinks a little pee (or poop) is no big deal.  I am working on it and mad at myself, because I have been trying to not freak out on her, and to tell her, "it's okay, just keep trying".  Now she pees "a little" and thinks it's some kind of victory!  
• I took Maria and Veronica to P. Flynn's for lunch, Maria wanted chicken and fries and I'd rather go there than McD's but OMG was she bad.  Baaaaaad.  Freaking out, crying, just ... bad.  And my friend Tim went into the game room and won them a toy, even!  Just bad!  But we made it through and went home. 
• Then the girls napped, which is good, because it gave me a little time to sit down (15 minutes) and some time to clean up before Anthony and Amy and Lisa were all coming for home therapy. 
• Maria and Veronica were up shortly after Anthony got home, and it was... difficult.  Maria is a difficult person, she just is.  She is FINE if you want to do everything she says but the minute, the second, that you tell her that you can't do it RIGHT THEN, it all goes to hell.  It is beyond exhausting to be here with her for V's speech therapy and for A's home therapy. 
• So I talked a lot with Lisa, from Anthony's school, and I feel good about where we are.  I am hopeful that things will start to come together and I am really excited about the iPad and where that will lead us.  
• But Anthony had one long episode and a few short ones.  Then those guys left and Mike came home.
• I forget why, but I had Maria upstairs in her room, so when Mike got home, I just went up and let her out and went in my room for a timeout so I wouldn't kill anyone.
• Mike gave the kids dinner, and they don't eat a bite and then they get baths and brush their teeth and want to come downstairs and eat everything.  Should I give them dinner after their baths?  Send them to bed hungry?  I feel like this would bite me  in the ass.  
• Mike went out to get some milk for me and some dinner for us and right after he left, Anthony dumped out a whole pitcher of Crystal Light grape juice.  It went everywhere so I cleaned it up and the whole time he was waiting, patiently, for me to clean it up and then give him some freaking juice.  I cleaned it up and then I walked out of the room and BOOM! he dumped his chair over and I took him up to bed.  I am over him - he just gets to a point in the day where he is just going to destroy stuff and I can't take it. 
• I have picked up, no exaggeration, hundreds of things today.  He drops ice cream sandwiches everywhere and I don't always find them right away.  He is upstairs screaming right now so I am going to have to go up.  He's extremely tired, up before 6 every morning this week and up late at night, and so, so screamy every morning.  It has to be tiring, right?  I said to him before, when I was leaving his room, just go to sleep.  It's Friday, tomorrow is Saturday and you can sleep in.  I don't know - is his receptive language not that good?  Does he just not want to take my advice?  It's all a mystery.  A stupid, boring mystery, not a good, exciting Agatha Christie or something.  
• Thank God it's Good Friday, because I keep thinking of redemptive suffering.  I hope there is something to it!  

School

I have lost the charger for my camera battery so you will just have to picture Anthony in your mind for now, he's as cute as ever.

I've been thinking about school so much lately.  Anthony is - he seems to be stalling at school and not making any real progress, to me.  I talked about it with one of his therapists and I guess he probably *is* making progress, it's just the teeny tiny progress that you can't see very well.   You certainly can't see them through all these tantrums, that's for sure!  I think, well, maybe he's not at the right place, maybe a traditional school would be better for him and then I think, maybe this is just what he's capable of, right now.  Maybe he's ... I hate to say it - maybe he's more severely affected than I will allow myself to think, maybe he's not making much progress because he just can't.  It's hard to know where to draw the line - I don't want to move him around and keep pushing, I know he is trying as hard as he can, I just want to be sure *I'm* trying as hard as I can, too.

A long time ago, a friend of mine was talking about her daughter, she was saying how mean she could be.  She said that her daughter was having a birthday party and she didn't want to invite this kid with autism.  My friend told me that her daughter said, "he's not going to know!".  At the time, I remember thinking, "good point".  But now I think, I bet that kids mother knew.  And maybe that kid DID know.  And if I send Anthony to a public school and he visits a regular classroom or whatever, or if he ever gets mainstreamed but can't actually BE part of the mainstream, is that going to happen to him?  And then my head explodes from sadness.

I keep reading this thing on Facebook, where apparently it is SPECIAL EDUCATION WEEK every damned week, where it says something like, "won't you please be kind to these kids with autism, who will surely be bullied and treated badly?".  I think, really?  Why is it just understood that if kids with autism, if MY kid with autism, tries to go to PUBLIC SCHOOL that he will be bullied?  Boys will be boys?  Kids will be kids?  Humans will be GIANT jerks?  Ugh.

Anyways.  It's going to be summer soon and I feel like we have to make some choice, every fall, about how Anthony is going to continue.  I wish I felt like he was making more progress at his school.  I'm going to mark how he does in this camp this summer, away from school for two weeks, and maybe decide from there.  He is so unhappy, he seems so unhappy and I wonder what is he trying to tell me?  Is he trying to tell me he's sad?  Or is this just the way it is?  What I want to know, Lassie, is if Timmy is down the well or not, ha!

Saturday

Mike took the kids to get donuts and bagels and coffeeee and juuuuuuice, so I thought I'd update.  He is doing pretty well with the iPad, we are going to have to find our way with it, and he certainly hasn't just picked it up and started communicating, but he is interested in it and that is a great start.

I downloaded some free apps, including these ABA Flashcards.  He likes the alphabet one, which shows the alphabet, obvs, and a word that starts with the letter, AND a voice says what the thing is.  Like A is for Airplane and a nice woman's voice says Airplane when you look at it.  You can either arrow to the next letter (B, for those unfamiliar, ha!) or you can swipe your finger across the screen.  This is what we are trying to get Anthony to do.  After four or five letters, it plays beautiful classical music and shows notes dancing across the screen.  There's also animals, food, emotions and ... something else I can't remember.  Anthony likes the alphabet and the animals, so far.  They were free for the month of April.  We have good timing, at least, in getting the iPad, because there are a lot of discounts and free apps for Autism Awareness Month.

We downloaded the Grace app, which Anthony and his speech therapist are working on.  I had seen it on a friend of a friend's blog, she showed how customizable it was and it is.  Anthony is not taking too it too well, yet, but we are hopeful he will come around.  It's sort of based on the PECS system and Anthony has never had too much interest in pictures to communicate, try as we might.  He always just hands us the picture and says what it says in his voice, and he's kind of patronizing about it, as if WE are the ones that need the picture.  I have been talking to the programmer of the app and have gotten some great information.

We bought all of Anthony's favorite Signing Time songs for our iTunes a while ago, and then since I forgot, I bought them AGAIN last month, and I also bought a cd for Anthony to have at school, so I moved his Signing Time songs to his iPad and he really, really liked it.  Then Mike mentioned maybe there were videos we could buy so I looked on iTunes and while there weren't videos available, for only $4.99 I found a Signing Time App (cue angels singing, crying in happiness) and it has flashcards AND videos, INCLUDING Anthony's favorite, which is "Show me a Sign".  I love it too, actually, it was one of our first songs, when he was so little, and I bet I sang it 1000 times before I could sing it without crying.  The lyrics go:

How are you doing, little one, my little one, my little one
I'd like to know what's on your mind.
Our days together, time together, you and me, are one on one
These are the times that make me smile - you make me smile!
Tell me that you love me, tell me that you're thinking of me.
Tell me all about the things you're thinking, day and night both day and night.
Tell me that you're happy and you love it when we're laughing.  Tell me more, tell me more,
Show me a sign.
Every day you grow up more, you teach me more and more what I'm here for,
and every day I love you more, I love you more, I love you! (this is typically where I really lose it)

Waaaah!  We love it and he loves the song but also the signs, so now his therapists can use the app to see the video and learn the signs themselves.  So.  Winning!  is what I'm saying.

I also had two apps sent to me from Ruckus Media and we are going to start checking into those this weekend.  I also want to get the app iCommunicate, which I hear great things about and which I think might be a good transition for Anthony to the Grace app.  He seems to like to hear words and it intrigues him, coming out of the iPad and we want him to be interested in it first.

iPad

We got Anthony's iPad yesterday and sent it with him to school today.  I am so hopeful that he will like something about it and be interested in it.

Mike and I were talking today about it and I told him - it's so hard to be stuck in the place we are right now, with Anthony.  I think I can safely say that he hasn't made any real progress in a long time.  A year?  It feels like the only thing that has increased for Anthony in the last year is his tantrums and his teeth grinding.  These are not great goals to have met!  It's hard for Anthony but it's hard for us, too.  It's hard to not move forward at all, especially with Maria going great guns right beside Anthony.  Even though Veronica isn't talking, really, at all, she is moving forward, she is very engaged and you should see her point at things in a book.

But we are in the same place with Anthony, all the time and it's very wearing.  I'm sure it is on him, too, even though he doesn't say it.  We are human beings, and HE is a child, he is supposed to be learning new things every day and living his life and I feel like he can't.

So.  This is getting kind of depressing, I guess.  What I'm trying to say is that I hope something works with this iPad.  But Mike says, and it's true, if it doesn't work, if Anthony doesn't seem to respond to it, we will just try something else.  We will just keep trying things until something works.  Or until I have to go live in a home for the criminally insane.  Whichever comes first!

Hair DON'T

 What in the hell is going on with that hair? It's long, right, so I cut his bangs yesterday. Sweet Amy was here for home therapy and she offered to help so we did it. But he got very upset so all I could do is take one SWIPE across his forehead. He looks like a dutch boy in the front and a party in the back, now. If I could have *one* minute, I could neaten them up but it's honestly not worth it, he gets very mad. He doesn't know what is going on and he just - well I mean, I don't blame him but it's unfortunate. But the back! It was all weird this morning, he needs it washed, I guess. I have to work tonight so Mike is going to be bathing him alone - usually I wash his hair but it has to be done tonight, it's so strange looking. I figure maybe he had a rough night, got all sweaty, etc. I have told my family and said on Facebook but we are having another baby in October! I am one of four, and now (for now) Anthony will be one of four too, I guess. My mom had a boy, then two girls, then a boy so I think maybe that's what I'll do too. There is no actual genetic reasoning for this, it would just be funny is all. I told my mom I was afraid that I'd have a boy and he would be just like my little brother John, ha, and my mom told me that John was a *very* good baby, so there's that. Anyways, I think it would be nice if Anthony had a brother. I love the idea of brothers and I think it would be nice if I had some tough-guy fourth child who could beat anyone up if they ever gave Anthony any trouble. I am a violent person, down deep, ha!

Autism Awareness

This is a good video to start off Autism Awareness Month, even though I am early.  I am so impressed that the four year old in the video can answer the question, "what's your name?" and "how old are you?".  I asked Anthony tonight, after seeing the video, "what's your name?" and he said, as you may have guessed, NOTHING.  I hate to be impatient, I don't want it to ever be that I want Anthony to be anyone but who he is, and if he can't talk, I don't want him to, FINE, WHATEVER, I figure.  BUT when he does say some things, I think, well, why not answer a question?  What the hecka?

Mine is really not to reason why, I know.  I KNOW.  But we are going to keep trying with Anthony.  He's clearly not happy, he clearly wants more out of his life, and so do I.  So do all of us.  He has so many people pulling for him and so many people working with him and he works so hard, I keep thinking, something has to click, something has to work for him so he can communicate better.  It has to.  I pray every day for a miracle but not one that means he will talk, or say his name or whatever.  I pray for a miracle that he can find his way, that something makes him want to be interested in us and in the world.  I know miracles happen, I just want one of our own.  And I want it now.  :)

Teeth Grinding

Anthony has been grinding his teeth for a long time and he is actually starting to wear his teeth down.  We have to do something about it and I just ... I'm out of ideas.  This is when I need the help of professionals and I hope I can get it.  We have tried to give him a 'chewy', I have tried to teach him to chew gum, I try to do massage on his gums and jaw, nothing stops him.  It's not like he does it at night (although he might) and I can put a guard on his teeth, so I am feeling pretty helpless.  Today I decided, in all my spare time, to look on the internet about it and I found this link.  I sent it to his speech therapist and I'm hoping we can get going on it and maybe stop him from doing it before he gets his adult teeth.  So if anyone has any information about it, let me know and if not, just keep a good thought that we can get him to stop doing it before he becomes toothless.

Rough

Poor Anthony. We have been having a rough day. It's very hard to keep yourself happy, or even close, when there is so much torment and teeth grinding going on. He's good now, which is what we should concentrate on, I guess. One moment at a time.

Window

I wonder what people going by think, when they look in and see this giant boy, bouncing up and down. I couldn't get a good picture of him because it's kind of dark in the dining room but I love to record when he is happy and he was happy here. He has actually had a pretty good day, which followed a terrible, TERRIBLE day and night. They called yesterday from his school and said he had a fever, then when I went to get him, his afternoon therapist told me his temp was almost 102 and he was shaking. She also said he had fallen asleep, which of course never happens.

When we got home, he hung out in the car for a long time and then we finally got him to come inside and he slept on the couch until Mike carried him up to his bed, where he slept until almost 11:00. Coincidentally, 11:00 was when we were going to sleep and then he or Maria or Veronica was up all night, literally all night. It was terrible, poor Anthony wouldn't take any Tylenol and he was burning, BURNING up. He won't take any, he spits it out, I don't know what to do. I suppose we could treat him like a dog and hold his mouth closed but it freaks me out to do that. Thanks to God, he was cooler when he woke up this morning and he let me put him in the bath, which really seemed to help. I got us all dressed (Mike had taken Maria to school and was hanging out down there) and Anthony napped a little more, then when he woke up he had some crackers and juice and slowly came back to his normal self. He just went up to bed and I assume he'll be up until 10 or 11 like usual, and tired tomorrow, but healthy and back on schedule. It was beautiful here today, so he was able to get some fresh air. He probably would have preferred to sit in that damned van all day but we forced him to go outside, ha! I swung him on the swing for a while and he just knocked around.

It felt like my heart was breaking last night when I couldn't make him better, it's so terrible. I feel like I am supposed to take care of him, I am always telling him he's safe with me and then there I was, NOT able to do anything and in fact getting kind of short tempered and mad that he wouldn't just TAKE the stupid TYLENOL already. But things are better now and hopefully it's all a memory. His iPad ships on April 7, I learned today. I had to look at it because there was a charge for like $80 on my credit card bill. Apparently, Apple charges you for the warranty before the thing ships. Is there anyone in business that isn't a giant scumbag anymore? Anyone?

Parenthood

Mike and I were watching Parenthood on NBC but now Mike doesn't like it anymore, so I am a few episodes behind.  PLUS it makes me crazy the way that they show tv shows nowadays.  I know I am dating myself, both from saying "nowadays" and from talking about how Happy Days and Laverne and Shirley used to come on in September and go until MAY and now you get like three weeks of new shows in a row, nine off, three new shoes, ten off, and then two more shows and that's a season.  It drives me mad.  Plus I work on Tuesdays and that's when Parenthood is on.

BUT a few weeks ago they had this episode where Max, the kid with Asperger's and his Dad, went to an amusement park or something because the dad wanted to have a 'normal day' with his son.  He just wants 'one day'.  Of course, it doesn't go well, Max freaks out because he is off his schedule.  Boooo hoooo, I think.  It's useless to wish for one day that your child wasn't your child and I think that's kind of what wishing their autism away would be.  Of course, I understand wanting to have a tantrum-free day, or a good night, or whatever, but I can't see wishing for one day that your kid wasn't your kid.

Max is all toilet trained and speaks and is super smart and likes bugs and has interests.  Yes, he has autism and he has tantrums and ... I mean, he has autism!  It's hard!  But there are things that I don't like about how autism is represented on this show, and this is one of them.  The dad wants everything to be okay and be 'normal', just like a dad would, right/  The mom is kind of a harpy, and she's always CRYING and trying to do the right thing by her son, even if it means embarrassing herself.  The Grandpa doesn't understand WHY the kid just can't be NORMAL and in the beginning, he thinks good old fashioned discipline will help.  The couple has some friends whose son has autism and he's the WORST behaved kid ever and they just let him go off all the time, they're obsessed with diet and therapy and of course, eventually, the get divorced.

Another thing I don't like is that this tv version of autism is such b.s.  I mean, I know some kids do speak and are super-high-functioning and I know they have autism too and it is as hard as anyone's situation, but it really gets pretty wrapped up by the end of each episode, for me.  I feel like they would never have a character like Anthony on a tv show and it bugs me.

The other day I went to Five Guys for takeout for lunch for me and Mike and I checked in on Facebook.  A friend of mine commented, asked me did my kids climb all over the bags of peanuts they had there?  And I said, for what felt like the millionth time, we do not take our kids to a place like that.  If we go out to eat, it has to be carefully orchestrated and timed so that it goes as well as possible for all involved.  It sucks but that's the way it is.  And I feel like no one will ever know the way it is, the way it can be for some of us, if the only exposure they have to people with autism is Rainman and now Parenthood.  It's good but not enough.

NOT that I'm saying that they should make a tv show with characters like us on it.  Frankly - ugh, who would want to watch that trash?  I'm just saying it doesn't seem very representative of all families of people with autism and I think people think that it is.

Shifty McGee

Doesn't he look shifty here? He's not. He doesn't have a sneaky bone in his body, really. In fact, he is so sweet and guileless that it's amazing.

Anthony had a good week. He woke up about half the week in a tantrum, and I think for a while it had been *every day* so that's good, right? We have been getting outside a lot and it's not ideal, but it's better than winter, for sure. We have our new fence and it's great, but of course Anthony likes to go right out of my line of vision. So when I'm out there with the three of them, it can still be a little hairy. The other night after he went to bed, we couldn't find his shoes, we looked and looked. I knew they had to be in the yard, so I kept searching and finally found them in the window well by the crawl space. The window was open, which scared the life out of me because if he had crawled in there, and I lost him, I wouldn't have thought of that space first.  I would have been looking and looking around the neighborhood and he would have been in the crawl space and could he have gotten out? Who knows? So anyways, now I know and the window is shut and we are putting something in there to block it so it won't be an issue anymore. It is truly always something, with all little kids I think, but especially with Anthony. Like I don't think it occurs to him to climb over the chain-link fence that belongs to our neighbor, but he always stands on stuff (firewood, a sandbox behind our shed) to get up higher and he *could*, in theory, just swing his legs over. We met our cute neighbor kids this week and the five year old was doing just that. Anthony wouldn't copy what someone does, he's not into imitation, God knows, but still, it's nervewracking.

Today is my birthday and yesterday, he came home for therapy with Amy and his ... program manager? Case manager? I forget her title but her name is Jen came with Amy. I had some friends over for lunch and they were still here, so it was busy is what I'm saying. Anyway, Amy gave me a card from Anthony that his whole team had signed. She brought him over to me and he said "Happy Birthday to: " and Anthony said "YOU!". It's the best present I could have received and I got a Nook AND a Flip, ha!

Longest Hour

A lot of my hours feel long, but the longest hour (and a few minutes) of the week is when Mike goes to church and I am here with the kids.  The girls are SUPER noisy and I spend most of the time telling them to PLEASE be quiet and to USE A QUIETER voice, while I am trying to listen for Anthony.  I try to catch him before he gets mad, which happens, I guess, about five seconds after he wakes up.  Today we went upstairs to get the girls dressed and I heard him crying.  I have to go in and close the door and listen to the girls get mad about whatever the HELL it is that they're getting mad about while I try and comfort him.  He is almost always wet, and so are his pajamas and bedding, so I have to get him out of there, all the time listening to those darlings in the other room a) dropping a 10 lb. weight on the floor, b) climbing up from my hamper to my dresser and/or c) being mad and screaming because she CAN'T get up on the hamper.  I race back and forth between the girls in my room and Anthony in his, changing sheets, changing diapers, singing and trying to head off his tantrum, and it never works and the whole time I think, please come home.  Please come home and help me.  Then two hours later, I go to church and the same thing happens to Mike, minus the wakeup.  Another pleasant Sunday, ha!

Better

Things are getting better today, Anthony has been outside a LOT.  Like a LOT a LOT.  We love this fence!

All my bags are packed

Ha, ha, I mean the bags under my eyes, good God! I told Mike, I always have this idea of how I look in my head and then I see pictures and it's all blown to hell. Oh well, I suppose my vanity is less important than having some pictures of me with these kids. Especially this big baby, who crawled up into my lap today and snuggled under the blanket I had on my legs. Isn't he something? He is having a rough morning, I hate to say, but it's true.

He's been sleeping in on the weekends which was great, because it gave him a chance to catch up from the week but no more! He was up before 7:00 today and Laura, who babysat last night, said he was quiet around 10:00, so that's not great. It's also not terrible, I try to be mindful of the fact that there are other kids his age with autism (and NOT with autism) who sleep less than that. But he got so, so mad this morning, his tantrum lasted 22 minutes, which feels long as hell, trust me. He is doing better now.

We ordered his iPad today, I am so excited. We should have it in a few weeks.

So - there you have it, that's what Saturday looks like around here. It's not pretty, but I have to record it. Ha!

What Does Autism Look Like?

I read this blog entry today and I think it's interesting.  Does it make it easier for kids with Autism that you can't really see that they are not typical?  I remember at Anthony's first case conference at his school, the one where they diagnosed him with Autism, one of the people on the committee or whatever, said to me "he's so beautiful.  I bet that makes it hard, when he acts out and people think he's just being 'bad''.  It was the first time I thought about it, but I think it does make it hard.

I was reading this thing the other day on some mom's board about toilet training.  Some woman said that she and her husband were *laughing* at this mom and her child, who was "about three" in the woman's estimation, and the mom was changing the kid's diaper.  The poster couldn't BELIEVE someone was three and not toilet trained!  I was so mad at this person, I mean, all I could think is I wonder what she would think of me if she saw me changing Anthony's diaper, or if she saw his diaper peeking out from his jeans.  And then I thought well, if she and her husband laughed at him and I saw it, I'd have to kill them and then I'd go to jail and then maybe finally I could get some rest.  Ha!  Kidding!  But really, I mean, who do you think you are?, I want to say.  How can you judge people like that?

I am a judger, by nature, but I have really tried to curb it.  Even before Anthony was diagnosed, even when he was just little and crazy, I was so appreciative when people wouldn't stare at us or worse, say something.  I remember one time at Target, he was flipping out and I sat down on a bench so I could nurse him and some cracker ass woman walking by said, "Ewwww!" to her daughter.  And I mean, I wasn't doing it because I LOVED exposing my boobs to the Target and everyone in it!  I was trying calm my crazy baby!

Anyways, no I do not think it makes it easier that Anthony is gorgeous and looks 'normal', whatever that is.  I suppose it might seem that way, but the thing is, he could have horns sticking out of his head and he'd still be perfect and gorgeous to me.  I think that the 'well-meaning' grandmother referred to in the story isn't thinking it through - of course your children are perfect looking, to you.  And if you don't care what other people think about how your kids look (and why would you?), then no it doesn't make it easier that Anthony isn't in a wheelchair, or his eyes aren't crossed, or whatever.  I do think Anthony and my other kids are super cute but I could be wrong, I suppose.  I am blinded by love.  p.s. I do not think I am wrong.  Look at him!

What's New

Well, Mom, in answer to your question, we are having the fence installed next Friday.  I'm SUPER excited, in my imagination, I picture the weather getting good that day and just staying good ... forever.  We got a six foot privacy fence, with a gate going to the back deck and door and another gate on the other side of the house, actually a double gate, so it can fit the riding lawn mower.  We got our fence from Amerifence and I have been really impressed so far.  I got three quotes from three different places and the guy who we worked with from Amerifence was beyond nice and professional.  I told him that we had to get a privacy fence because my son had autism and I was concerned about him climbing a chain link fence - or maybe attempting to climb a chain link fence.  As soon as I said that, he just started looking for ways to make it easier on us and I - I can't tell you what it means to me, for someone to just be nice and decent and kind, especially when it comes to Anthony.  You hear so many stories about TERRIBLE things happening to kids with autism, being bullied, misunderstood, not given the things they need in school, being restrained or hurt, on and on and it can be so depressing.  I'm telling you, this guy is lucky I didn't break down CRYING or HUG him or something when he was so nice.  So.  That's new, the fence.

Also, I don't know how much anyone cares about this, but the new iPads are here, the new iPads are here!  This means that the new (supercool) iPads are the same price as it used to be for the now old ones.  SO we can either get an old one, and maybe use the money on more apps for Anthony, or we could just go ahead and get the new one and then he'll have the newest.  It's really thin, it's thinner than Mike's iPhone and that's thin, baby.  We're going to order it this week and we're already working with some of his therapists on it.  Here's a good article on the success one boy found with the iPad and I don't want to get my hopes up, ever, but I just wish that it would be a positive thing for us, however that is.

Also, Anthony is swimming away, we'll go tomorrow night again. I forget if I said but he's signing up for another session.  We can just keep going from now until doomsday and I think we're going to.  I can see him making progress every week.

His hair is getting SUPER awesome.  All three of our kids have cowlicks in the back of their hair and they make the problem worse by rubbing the back of their heads on their carseats, or wherever they're sitting.  So we have been struggling with knots in all their hair.  Anthony hates to have his hair combed or brushed, BUT I bought a new shampoo and a good comb and it seems like I can get it under control.  I hate to have to cut it - both because we HATE to have to cut it and make him so miserable, even if it's just for a little while, and also because look at it!  Coolest hair ever!  Number One Hair!  :)

Books

Anthony's old therapist Pam told me at Christmas time that he liked these Search and Find books.  At his school, they have a GIANT one, it must be 2 by 3 feet!  I tried to find him some for Christmas, my sister found these big ones at Home Shopping Network but they are not board books, so there has been some ripping.  I have taped the HECK out of them by this point.

So.  Enter my brother Larry and his family.  They gave the kids Barnes & Noble gift cards for Christmas and yesterday I took Anthony on a little outing, just the two of us, and we bought some new books.  I bought books like these, mostly.  I bought one about People, Places, and Things, one about Places to Go, and ... another one. For the girls, I bought an Elmo one (Veronica) and a Princess one (Maria).  I figure they'll all like the seek and find-ness of it.  Anthony really seems to like them.  His favorite animal is the pig and he loves when I make a pig sound right in his ear.  Unfortunately, I have a bad cold right now and it sort of makes me sick to do it, but I have to persist, he loves it so.

Last night, he was super tired and he got *very* upset before he fell asleep kind of early, I guess around 8:30 or so.  Mike and I went to bed early because we figured he'd be up early.  Veronica woke up at 3:20, though, and we let her cry for a while but we were worried she'd wake up Anthony so I got her for an hour or so and then Anthony DID wake up around 4:00.  Meanwhile, Veronica was up until like 4:45 or something and went back to bed, but Anthony never did.  It's an insane asylum around here, sleep-wise.  Otherwise, too, actually, ha!

Hair Don't

Isn't he so cute?  His hair was like that the other day when I went in to get him and I called Mike up to look - I couldn't believe it, it looked like a tornado was in it or something.  He kills me with how cute he is.  He had an okay week, even though he had a stupid SNOW DAY yesterday.  It's crazy - we were up at 5:00 and we saw that the school system that his school goes by had a delay, which made us happy because that means he'd have regular school.  Then at 7:00 Mike saw it was a delay and then at like 7:30 they had changed it to them being closed.  What in the hell?  I would think by then some people may have already left to go to school.  And OF COURSE, everything was FINE by 9:30 or whatever.  Here's the thing - it was snowing and there was some wind.  But my LORD - it's winter!  It's Indiana!  What are we to expect?  And I know that his school has to go by some school system or another but it seems SO stupid that we have to be closed just because a certain school district is afraid of their richie-rich students and parents being upset because the little darlings might get some SNOW on them.  Veronica's therapist lives there and she said that normally the town plows all the side streets but that they hadn't gotten to them when she left for our appointment (8:30).  And I feel for them but BOO HOO, they never TOUCH the side streets in Indianapolis!  I think there are like 10 major roads that they plow and that's it!  Suck it up, suburbanites!  

Mike had to stay home from work because I had Veronica's speech therapy and then I had to take Maria to ballet and I just don't know how I'd do it with Anthony, too.  The funny thing is, Anthony is really not the problem but I can't beat Maria down during Veronica's therapy and watch Anthony and I can't watch Anthony while Veronica exits the damned building every two seconds while Maria takes ballet.  Also, Anthony's tantrums are back with a vengeance and it would be hard for me to control him and the other two if he were to get upset.  So.  Mike stayed home and we are lucky he's able to, I don't know what I would have done otherwise. It makes me wonder what do other people do.  What do single parents of autistic kids do?  Ugh.  

Anyways.  So his tantrums are back and that stinks but we had that excellent week where he was sleeping and never having meltdowns and that still happened. Like I think of it when he's yelling now, how sweet it was when he was happy.  I know it's possible now and it will be possible again, I just have to wait.  

One of his therapists told me this week that they have figured out what his problem is - I mean, why he gets upset, and that it is jealousy, straight up!  She was training a new therapist who is going to work in the new facility, and she said every time she took her attention off Anthony to tell this other therapist something, Anthony would get mad.  It is reassuring to me, because that's what we find at home, too.  He mostly gets upset when he is left alone, when we are doing something with the girls.  BUT lots of times we try and do stuff with him and HE leaves.  So it's a conundrum, still, but it's nice to have some information.  As my sister says, it's fun to be fooled, but it's better to know.  

He is still enjoying swimming, I think he really looks forward to it and is glad to be here.  We filed our taxes and we're going to get him an iPad when we get our money back.  Maybe some day it will be above 50 degrees again and we can go outside more and all be happier.  Oh, we did go for a walk yesterday, just Anthony and me.  We went down the sidewalk a ways and then turned around and we came back and he turned right into our driveway and headed up it.  It made me happy, to know that he knows where to turn.  I know that might seem dumb but ... well anyways I am glad.  

With Amy

We have certainly had some bumps in the road with home therapy, but overall it's been going pretty good. The only reason it goes well when it goes well is because of Amy. By the time she and Anthony get here now, Veronica has had speech therapy and then Maria has ballet and both are difficult because I am trying to corral the person who is not the center of those activities and I am pretty cooked by the time they get home. But Amy plugs away with Anthony and she deals VERY well with Maria and Veronica and we just get through the afternoon. Yesterday they played outside a lot and then Amy and Anthony took a short walk, and it was a great success. It's successful for Anthony and the girls, and also for me, because it's nice to have someone to talk to!

Friday

Anthony had a good week, we are just skating along on our new schedule of sleeping well and not having tantrums.  He had swimming last night and he did just great.  I didn't take him last week, so I was really happy to go last night.  We go to the YMCA, and I - actually I think we are just calling it the Y these days but it is amazing.  I can't get over how kind and wonderful everyone is there.  It is in a not-so-great part of town and the one where Maria goes to preschool is in a better part of town but the difference in the way we have been treated is amazing.  At  Anthony's Y, the Aquatics director comes over every week and calls Anthony by name and asks  how he is.  Since we missed the first three weeks, we are just moving right into the next class and we are going to make up the ones we missed at the end.  The teacher is just wonderful with Anthony, the lifeguard is really nice and cheers him on.  When I went to Maria's Y with Anthony, years ago, for a swim class, it was a nightmare.  The indoor class was moved outdoors, it took me hours of hounding the Aquatics director on the phone to get the money back, it was horrible.  They're just not as nice.  Why is this?  Are people nicer in worse parts of town?  Is it a coincidence?  I know not.

ANYWAYS.  Amy came over today, we played outside some and ate some and she and Anthony took a walk.  We are making plans for some super fun outings when the weather gets better.  I'm bullish for the future.

My Sleepy Valentine

Of course he's yawning, he woke up around 3:00 this morning! He is STILL up and it's almost 9:00! What is he made of, what kind of strong stuff? He is doing well, sleeplessness be damned. He has moments where he struggles, but he's doing so, so much better. We all went outside today and he was jumping and spinning, so excited to be out. He is the love of my life, I feel like. Ha, he would actually make a bad boyfriend, I suppose, what with the kicking me in the throat and the worrying me. But I just - no one has ever needed me as much as Anthony and instead of it feeling kind of choking and scary, it feels exactly right. I feel like we are right where we should be, all the time. We went for a walk this weekend and I was saying, remember Anthony? Remember when it used to be just me and you and we'd walk every day? He, of course, didn't answer but I think he hears and understands me. I think he misses it too. :)

Swimming

Mike took him swimming tonight - through a series of early wakings and non nappings, I am exhausted and I didn't want to drive Anthony to swimming, so Mike took him. We should probably trade off anyway, so he's used to going with either of us. Anthony is not a person who is really hung up on routine like that, but we may as well try to avoid it where we can. Plus it's super fun to watch him have such a good time. For some reason, his lesson was only 30 minutes instead of 45 tonight, I'm not sure why, but that's probably enough for him anyway. He had another good day today. I can't even really talk about it, I can't stand to think that we might be free of these tantrums. I mean, not even completely free but just to be given a break like this feels like an unbelievable miracle.

Ooh, he is driving me batty in other ways, though. He takes EVERYTHING out of the silverware drawer. It's ... it's insane, I told Mike tonight, I was thinking of where I could keep all the stuf in the cabinets and drawers but the fact is, I have to keep the stuff that's in there IN THERE. I just hope to keep telling him no and redirecting him and maybe someday he'll get it. Of course, both his sisters do the same thing so several times a day, it feels like, I take everything that's been in every cabinet and drawer and put it back. Maddening. Also, tonight, not to talk to much crap about him, he went upstairs and ran the water in the bathroom sink, that he was SITTING in, and the water ran everywhere, quite a bit of it. It took about 12 towels to clean it up. Sheesh. I try to think of it as an adventure and a lesson but man. It's tiring.

Big Day

Last night, as I was going to bed, it dawned on me that Anthony hadn't had a tantrum all day.  I have this new plan with his tantrums, which is to completely ignore them until they're over and then when they're over, offer Anthony a treat and tell him how glad I am that he feels better.  I also have been talking a LOT more to him, just in case he is worried that we won't take care of him or something, I tell him all the time that we ARE here for him and that we LOVE him and that we will ALWAYS take care of him.  So maybe it's a combination of those things, or maybe it's for no reason at all.

Either way, I don't care, I just want to go on record that yesterday he didn't have any tantrums at all.  This morning he woke up at 4:00 and was miserable at 5:00 when he was dirty and we had to put him in the damne bathtub but I don't care.  He had a completely good day for the first time in many months and I'm thrilled about it.

Mad

Sometimes he gets really mad, Veronica was all up in his grill and he didn't like it. He had a pretty good day yesterday, he had a few near-misses where I thought he was going to have a tantrum and he didn't. Last night one of his old and most favorite therapists came over to babysit and they got to spend some time together after the girls went to bed, so that was nice, too. It was snowing before, but we're not supposed to get much, so I am assuming he'll have school tomorrow. He was off Tuesday, Wednesday and Thursday. I could see Tuesday and I suppose Wednesday but by Thursday it was really ridiculous. His school goes by the Carmel school schedule, which is fine, but I wish they could be a little more flexible about it. Like, I suppose Carmel didn't have school all those days because the CHILDREN would have to STAND in the ICE at their BUS STOP and oh noes! we can't have that, which is fine by me. But Anthony doesn't take the bus, it just seemed ridiculous for them to miss all those days. I mean - this ice is not going to melt for the forseeable future, so it seems to me that these cities should make some sort of contingency plan. Anyway. He was home all week and he did very well, considering everything.

Imp

Table

Yes, he's standing on the table. He is going crazy, poor baby, without a schedule. He's been home for two days and last night Mike and I went up to him and changed his diaper and laid him down. I said, look, you can't go to school tomorrow, why not just go to bed soon and get a good night's rest?
And he did! He was asleep around 9:30 and slept until like 8:00 this morning. He is well-rested but sad, today, I'd say, which beats tired and sad, I guess.

Happy

This is also off Mike's phone, you can tell Anthony likes him too. It's hard, because Anthony isn't always ... well, he's always affectionate but he's sometimes kind of disconnected from it, and sometimes with me, he is a downright user! Like he is hugging me but he is only in it for the skin-on-skin contact. But we know he loves us, so it's not an issue of that. I just hope that he is happier than he seems, sometimes. I wonder - I worry and worry about these tantrums, and when one will hit and I dread it and I wonder, does he worry about it too? Does it hit him out of nowhere or does it scare him? It freaks me out too much to think about it. So here's a happy go lucky picture of our happy boy. We'll just go with that.

Red Hat

Ha, he's a red hat! Mike said he just put this on yesterday and was playing around while wearing it. He's so cute in it, right? He's so gorgeous, to me. The lady at the Y the other night kept saying, "he's so good looking!" and I think she was sincere. This poor baby, Mike was saying, his little baby teeth are getting ground down to nubs. They still look like teeth but they are smaller, it's so weird. I am hoping and praying he can move on from teeth grinding once he has his permanent teeth.

Well, it's Sunday. Laura babysat last night and although he had a rough start, she said he was asleep by 10:00, which made me cry with relief when I heard it. He was up around 8:00 this morning (three LONG hours after his sister Veronica was up) so hopefully he'll be able to get back on track. We are just going to keep plugging away here and trying to make things better. We're going to get an iPad with our tax money and we're going to get a dog, maybe, and we're just going to figure it out. Probably.

Beautiful Boy

It's so hard - I took these pictures ten minutes ago and now he's in the dining room with Mike, so sad and upset. We had a hard week this week and even though we started swimming on Thursday, it ended up pretty rough. He doesn't go to sleep until so late, and so he's so tired by the end of the week. I am afraid he is getting sick, too, although it's hard to say because his ... well, it's like this: Mike and I were saying, we have stress go right to our stomach and so does Anthony's.

I had a loooong discussion with some people at his school this week and came away very distressed. I do think that they are doing great work with Anthony, but these tantrums are really getting in the way of Anthony's life and success. I mean, they are affecting us all, as a family, but especially him. I just don't think that we are speaking the same language. They recently switched his MWF morning therapist, who is the only therapist who has been with him from the beginning. So Mike and I were sad, because we really liked her and Anthony really liked her and she seemed to be doing very well handling his issues with the tantrums. But the thing is, he can't just work with the same therapist all the time, because the whole idea is that he's successful with everyone, everywhere. So we were fine with it, just sad, especially because of how it's been for us during the last ten months or so.

The problem came when I talked to the scheduling person at his school, and she said how they had to switch Pam off his case, they switch them every four months or so. I made the mistake of having ears and a brain and I said, well, he's been with her since last August, and that's a lot longer than four months and she said since Anthony had been having a hard time when they would have switched they decided not to. And I was like, well, mmm, that doesn't make sense because almost FOUR four month periods have gone by and Anthony is still having a hard time so why now? (And I'll tell you why, to save us all some time - because it was most convenient for THEM to switch her at this time.). And if the girl had just said that, I would have been FINE with all of it, but of course people are so full of b.s. that she had to go on and on about how they were doing THIS and THAT and the OTHER thing, and she got all circular and confused with what story she was trying to tell. In my opinion, this is why you should just be forthright and honest in the world. It will make your life a lot easier if you don't have to constantly try to remember what story you're telling. It also will make me not hate you and not want to deal with you anymore.

So anyways, then I get an update from the school that this therapist is moving to the new center and congratulations, and all this. And it's the therapist that replaced Anthony's long-time therapist for MWF mornings. The therapist who looked me in the eye a month ago and said how *excited* she was to work with Anthony and how *great* it was all going to be. She probably said this at the same time that she was filling out her application for her new job, which is something I just don't understand. I guess there is some incredibly fast career track at the school and they have to move therapists up, up, up, before they get bored and take their wares elsewhere. Or whatever. So I was mad and I called the scheduling girl, with whom I am no longer going to deal, because I am always thisclose to losing my mind anyway and I just can't drive myself crazier by dealing with the likes of her. Then I talked to the Executive Director and we got it all straightened out, I guess, but we were on the phone for over an hour, going round and round, both thinking we're right and - just - ugh. They think I'm some sort of crazy bitch, and they've been doing things all this time, I think, doing things just to keep me quiet and not because it's the right thing or because it will help Anthony. And I haven't been asking for crazy things - I've just been saying that THIS is the way Anthony's life is right now and we would appreciate some consistency. Then it turned out that the Director maybe didn't know anything about Anthony's tantrums and I know she doesn't have to but it's so strange, because it's such a giant part of our lives, really running our lives, and I feel like no one cares about helping us END them. It's beyond frustrating, it is downright depressing and it is the hardest thing I have ever done, and I assume Mike too, to just keep soldiering on and asking and begging for help and not being surprised or hurt when someone says, sorry, nope! We have nothing actual for you, but we will keep gathering data on it. And I think, gathering data? It seems like soaking dishes to me. Soaking dishes that do not need to be soaked, but you put them in the sink in water because you don't feel like doing the dishes right then. I know that this is not how it is, necessarily, but it's how it feels.

Anthony was so tired yesterday afternoon, he had a very, very hard time during his home therapy. But then he was up until 11:45, then Veronica was up at 12:30 until 2:00 and then Maria was up before 6:00. I do not know how we are supposed to do all this crap that we have to do to keep everyone safe and (relatively speaking) happy on this little sleep. I just don't know, it's terrifying.

Mike took them to get donuts today, and we all went to Costco, though, and that went fine. He is mad now and probably will stay rough through bedtime and then hopefully, if GOD IS A MERCIFUL GOD, he will just go to sleep kind of early tonight and get back on track. We'll see, though. I'm sure mine is not to reason why and there is some freaking reason that we are going through all this.

So. As is happening a lot lately, this is ending on kind of a bummer. But don't be bummed, think of Thursday night, when Anthony was so happy, in the pool! "Pool!", he said, when we got there. He kicked and tried to drink up all the water, and charmed his teacher and the Aquatics director at the Y. My sister Laura, who deserves a big shout out, came over and watched the girls in the time period where I had to leave to take Anthony to the Y and Mike was coming home from work. She is also babysitting tonight. Anyways, it's fun to do something with just one of all these kids, but for me, especially Anthony. He seems very aware and grateful that it's just us, like it used to be.

Liars

Pictures are liars, he was on the edge of a giant meltdown here and look how cute he looks.

Sweet

Aren't they sweet? I should say, don't they LOOK sweet? Because they are sweet but hoo boy it can also be kind of rough. It's so, so hard, especially on the weekends, with Anthony. I am so tired of being afraid of him and afraid of his tantrums. I of course am never actually afraid of him, but I'm afraid for him. I'm afraid he's going to wake up crying, I'm afraid he's going to have a big tantrum, I'm afraid he's going to get hurt or hurt the girls, I'm afraid it's always going to be like this.

That's the worst of it - I have to just take it one day at a time because otherwise I get NUTS, thinking, how will I control a giant 13 year old, taller than I am, who is flopping around and flailing out and punching me in the throat? We just have to keep trying stuff, keep getting in at him and finding out what ails him.

He is so cute and sweet, most of the time. This morning I went into him and he was sleepy and warm and happy, babbling away. It's so sweet and nice and also kind of ruined, because I can't just enjoy lying there with him, because I am constantly waiting for the other shoe to drop. Ha, to drop and to kick me in the face.

We start swimming on Thursday. I bought the cutest pair of swim trunks last night, so it should be fine, right?

Swimming

Lately, I have been getting very annoyed that we just can't do anything when the weather is bad.  All during break, we were inside allll day, and then on the weekends and this past Monday for MLK day, it's just been bugging me.  So I called the Y this week and we are going to start Anthony in swimming lessons!  Isn't that exciting?  There is a program called WAVES that the Y has, it's for special needs kids and they start out one on one, which is thrilling.  Anthony is used to one on one and I just don't think he'd thrive, right away anyway, in a class environment.

So on Thursdays, starting this week and going for six more weeks, we're going to go to swimming lessons.  Amy told me that he really enjoyed his swimming outings this summer, so I am bullish about it.  Of course, whenever I am bullish about something with regard to these kids, it ends up backfiring horribly, but I'm sick of being so jinxy and worried all the time.  So of we'll go.  Parents aren't *allowed* in the pool, which thrills me NO END, but it makes me all nerves too.  I'll keep you posted!

I thought I talked about the Dog Thing

... but I guess maybe I didn't?  I'm not what you would call a dog person and I am definitely not what you'd call a person that wants to take on any more work.  But a few months ago, a friend of mine wrote to me from Florida and she said that her neighbor's grandson had autism and that he had just gotten a dog.  She said the kid used to be a real 'bolter' and that the dog had really curbed (ha!  see what I did there?) the kids' bolting.  She said that the family told her that it had changed their lives.  Then I read a little bit about it on the internet and I kept seeing that phrase, that getting a therapy dog 'changed their lives'.  I thought, hey! our lives need changing!  Because our lives suck!  Ha, not really, but you know what I mean.

So I started looking into it, I wrote about it on twitter and several people responded with information and I started to look into it.  Then I went to a Christmas party at my friend Kathi's house and I was just talking about it and Kathi's cousin Evelyn said SHE was on the board of the Indiana Canine Assistance Network.  She said the greatest things about it and she said that it was much cheaper through this program than any other.  She kept saying it was a 'nominal fee'.  So I read about it the next day and saw that there was, indeed, a nominal fee of $25 to apply and then it was a not-so-nominal fee of $950 to get the dog.  I was shocked, as that seems like a lot of money, to me.  THEN I looked at some national programs and found out that it was like $15,000 for a therapy dog through them and I thought hey!  This is why $950 seems so nominal, it's *by comparison*.  So.   We had some trouble getting info at first, because I sent an email to get some information as to what exact kind of service dog we'd apply for, and of course I didn't hear from the person.  I prefer to email, always, but lots of people want to talk on the damned phone.  Since it's hard for me to talk on the phone, because of a whole host of reasons (our home phone sucks, our cell phones get bad reception in the house and in 90 percent of the city, AT&T sucks), I begrudgingly called this week and talked to a wonderful person who sent me the exact form we needed.  So.  We are on our way.  I am saving my lunch money and we're going to do this, as long as it works out okay for Anthony.  It's a very slow and gradual process, they want to be sure it's a good fit, as of course we do, so we'll just see.

Friday!

We are about to have home therapy for the first time in several weeks, because of break and then Amy was sick.  But she's better and break's over and hopefully we'll have some fun today.

My sister Laura babysat last night, which was a fun surprise.  She came over after I got Anthony, to bring Maria her birthday present (an excellent Dora doll) and I mentioned I had to go to Target, so she said if Mike wanted to go she would stay at our house.  So that was fun, we went to Target TOGETHER and we went out and Mike ate dinner and I drank wine and it was fun.  Laura called while I was out and said Anthony was making a lot of noise and she went up and he was naked!  So she got him dressed again, but she said she was calling to say he'd probably be naked when we got home.  We got home about an hour later, because really?  Who cares?  It was about 11:15 or so and he was, in fact, naked, and lying down on the chair/bed I got him.  It was hilarious, to see that sweet cute bottom sticking up on that Toy Story chair.  We rolled him over to his bed, (I should say his mattress, he's been tearing them apart) and threw a diaper on him and covered him up and he stayed asleep.  He was crying this morning around 6:30 but I think he had gotten out from under his blanket and he was cold.  I laid down with him and sang to him and rubbed his back and he went back to sleep for a while.  He's so tired anymore.  Every morning we tell him, you wouldn't feel like this if you'd just get some rest at night, but he either doesn't understand or doesn't care.

I was telling a friend this morning, between this therapy dog and the iPad, Anthony is becoming an expensive person to have!  These kids have been pretty cheap so far, though, so I'm not worried.  They were mostly breastfed, they wear hand-me-downs, etc.  I'm excited that something might help Anthony feel better.  He had some WHOPPER tantrums yesterday and I find it very difficult to keep up with them.  I am so hopeful that something will work - something has to work and I figure it's up to me, as his mother, to figure out what.

That stupid fake doctor in England who said that the MMR vaccine was responsible for bowel problems and autism was proven this week to be - not just a fake - but a fraudulent, money grubbing bastard.  I feel bad for people who believed him and based their whole view of autism on this one fact.  It is incredibly hard to not know what made your child have autism, the medical community DOESN'T do very much but ... I think that's because it's not really a medical condition.  That sucks but that's the truth of it.  It's a communication disorder, a delay, and we have to treat it as such.  I can't treat Anthony's autism with medicine, because it's not a medical problem.  He doesn't sleep well but I can't medicate him, I can't drug him, because he is just a little boy.  I mean, he could probably stand to relax a little bit but I'm not going to give him a glass of wine or something!

Today is Delurking Day in Blogdom, where if you are a LURKER, that is, someone who reads this blog but never posts, you should make a comment.  I've relaxed the rules on the blog so that anyone can comment, so please, feel free to leave one.  I have a site meter on the blog and I know many people look at it every day, so let's hear it!

iPad

So we are going to get Anthony an iPad.  I have heard a lot about how great iPads are for kids with autism, but I figured Anthony was too young.  Then my friend Susannah told me about a friend of hers, whose daughter is like TWO, and she has one.  I read this woman's blog about her daughter, Maya, and specifically about the iPad.  I got so excited when I saw the video that she made, and I thought we could do it too!  What the hell?  Why not? Anthony is almost six, so maybe he's not too young!

I talked to two of Anthony's therapists about it and they seemed really excited and on board, which is wonderful.  I have been advised to wait until April, because of how it all works at Apple, and so I think we are going to take some tax return money and get Anthony an iPad.  !!!  I'm going to check out some of the apps on my phone and hopefully learn some about it before we start.  When I think of the possibilities - that maybe Anthony could start communicating better and in a way that makes him happier - I want to plop down on the floor and cry.

With Mike

He climbed right up in Mike's lap, to eat his peaches that way. SUPER cute.

Counter

He has been going crazy with hunger when we get home. I asked his therapists if they could maybe give him a snack a little later in the day because it's bonky bonk, trying to endlessly feed him and deal with the girls, and get dinner together. He opens that damned corner roundabout cabinet and climbs up to get at the food, but then it's stuff he needs help with. He loves peaches, raisins, goldfish, frosted wheat cereal, and saltines. He ate all of those, times one million, this afternoon. He had a good day today even though he didn't have either of his regular therapists. Everyone is sick, there is definitely something going around. I will give my right arm in sacrifice if he doesn't get it.

I'm So Glad You Found Me In Here

I'm reading this book and it's incredible.  It's incredible how much it makes me cry, honestly.  It's written by a mother and son and the son has autism.  He's 28 and just graduated from college, he doesn't speak but he uses a communication device, which is basically typing.

It's killing me - the first thing he typed, after his name (he was 11 years old at the time) was "I love you", to his mother.  And I thought - let's get Anthony a typewriter!  Ha!  Seriously, it thrills me to think that Anthony loves me.  I mean, I know he loves me, but I have to say, it would be nice to hear it or see it written down.  Maria says "I love you too, Mommy" a lot and it goes a long way!

It makes me so hopeful and has really renewed my faith at this VERY annoying and difficult time in our lives.  Anthony can do anything.  It's true - how it is now is not how it's going to be.  Now matter how bad it FEELS.

Better Days

Good God, is he cute or what? These are better days because a) he seems happy and now he is howling away upstairs as I type and b) he is clearly eating grilled cheese and fries here, something he no longer does. Anthony hasn't been sleeping well, I curse that damned break, I feel like he'll never recover from it. I keep thinking it will get better. But lately I think I am sort of living the kind of life that I always thought people with profoundly autistic kids lived. Like I think of this tv movie with Brooke Shields and it was about some kid with autism and she was helping him, but she did this crazy "hugging therapy" that everyone said would never work and then it did! Anyway, everyone in that movie was pretty miserable and the kid was just, like not even there or something. It's not always like that, but more and more, it seems. Or maybe we are just tired.