Tuesday, April 26, 2011

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, April 22, 2011


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!  

Saturday, April 16, 2011


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, April 09, 2011


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.

Wednesday, April 06, 2011


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!

Saturday, April 02, 2011

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!