Monday, January 31, 2011


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.

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Sunday, January 30, 2011

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.
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Saturday, January 29, 2011

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.

Tuesday, January 25, 2011


Pictures are liars, he was on the edge of a giant meltdown here and look how cute he looks.
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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?
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Tuesday, January 18, 2011


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!

Sunday, January 16, 2011

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, January 14, 2011


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!

Wednesday, January 12, 2011


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.

Monday, January 10, 2011

With Mike

He climbed right up in Mike's lap, to eat his peaches that way. SUPER cute.
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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.
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Saturday, January 08, 2011

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.

Wednesday, January 05, 2011

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.

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