Tuesday, July 31, 2012

Laid Back

 This was Anthony, on Sunday.  Our weekends are still rough but they are better, always, in the summer.  This has been a difficult summer because it's been so hot but it still beats wintertime.

So Anthony had a great, great week at camp last week.  I think he did so much better this year than last because a) he is older, b) it was just for one week and c) and most important, he went with Kassi, his therapist.  She is wonderful with him and I just know he felt better and more confident with her there.  We have had our ups and downs with his school but we are so lucky that we can do something like this and have a therapist go with him to things like this camp.  I forget if I said but it's called Camp Ability and it's run by Easter Seals/Crossroads.  I didn't know too much about the particulars this year because I never dropped him off or picked him up but it's a great, affordable camp for special needs kids of all kinds and we're lucky that it's so close.

I never update anymore, but what is there to say?  He started PECS this week and his afternoon therapist told me yesterday that he did great.  She was VERY enthusiastic and she said that she thought he'd do well but he surpassed her expectations.  So that was good.  I am hopeful, maybe stupidly, but whatever.  We have to make something work, specifically with regard to this damned potty training.  It's a year this month that we've been doing it!  A year!

So we are plugging away.  I am of two minds on summer, I'll be so glad when SOME of my children (coughMariacough) go back to school but I want the weather to stay nice.  Of course, it hasn't been that nice so maybe it doesn't matter anyway.  Maybe I'm of more than two minds, ha!
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Wednesday, July 25, 2012

Big Day

Yesterday, Anthony came home from camp and seemed good, he had had a good day, his therapist said.  He went straight to the potty to get his braces off, it's been so, so hot here and they are plastic and really bugging him by the end of the day.  So I took them off, chatted with his therapist, and then she left.  I was sitting in the kitchen and he came in and said 'hot dog' and I got him one, crying the whole time, and cut it in pieces and he ate it.  It was such a miracle, to me, but it felt like such a natural thing!

I remember one time, years ago, I had a dream that Anthony was talking and talking to me.  This may have been when I was pregnant with Maria, it certainly wasn't when Maria was jabbering away or anything.  Anyway, in my dream, he was talking and talking, telling me things, and I was talking back and we were having a conversation, it didn't seem strange at all.  Yesterday wasn't like that.  It was the first time that he spontaneously has said anything to me, anything!  Ever!  I could not stop crying, I can't stop crying now, thinking about it.

He was off hot dogs for a while but we decided a while ago to give him different foods, to keep offering them, and just see what sticks and he has gone back to hot dogs.  Maybe that's it?  Maybe we have to keep switching it up and trying different things?  Whatever it is, I'm all OKAY!, I'll do anything, ANYTHING to keep having days like yesterday.

The funniest part of it all was that he was like, whatever, crazy lady, keep crying but cry and give me that hot dog!  He must think I am insane and I think he's right!

Tuesday, July 24, 2012

Camper

Anthony started camp yesterday and it went well, according to his therapist who meets Mike and Anthony there in the morning.  It is punishingly hot here, so I'm sure it wasn't GREAT to be outside but what can you do?  They are little kids, they don't seem as bugged by the heat as, say, I am.  It is like a vacation for me this week because I don't have to load everyone in the car and go get him.  He gets home a little earlier and we hang out and it's very pleasant.

His therapist said that he seemed happy all day but she said it's probably because it's much less structured than his normal day, which makes me happy.  He's just a seven year old boy, he can't be working all the time.

What else.  I am taking this class at the gym with a friend of mine and her mom had a ... I think a stroke, a brain type event, and she is in a rehab facility, taking occupational, physical and speech therapy.  The part of her brain that was affected didn't affect her intelligence, but it affected her ability to communicate and her ability to process things.  I was talking to my friend about her mom and it struck me, man.  We can all be struck with anything, anytime!  I try to think of it as lucky that we have known the deal with Anthony from when he was so little.  Yesterday I was trying to tell him to KEEP HIS CLOTHES on, nothing works, he doesn't get it, but I took a picture of him yesterday, with my phone and showed it to him.  I said, this, this here is what you should look like.  Keep your clothes ON, Anthony!  Like this!  We'll see if it works, but I am going to keep trying, keep pounding away at him until I figure out how to get to him.  I know it's in there - for my friend's mom and for Anthony, too.  I hope they both make some progress this summer.

Tuesday, July 17, 2012

Bullets


  • Anthony starts camp next week, I'm super excited.  He is going with a therapist this year, which I think will really increase his enjoyment of it.  I am hopeful that he'll like the hippotherapy and we can start doing that in earnest this year.  
  • 50 Cent was mean about people with autism.  Hmmm.  I don't know if I care - I mean, it's FIFTY CENT!  He was a criminal!  But I wish people wouldn't replace 'retarded' with 'autistic' and think they're being SNEAKY or something.  God.  Get a vocabulary!  But I'll say this - in protest, we are no longer going to sing "You can find him in the tub..." to the tune of 50's "In the Club".  
  • Mike and I are watching Big Brother and it's so, so weird.  There is this kid on there who clearly has autism of some kind.  He is addicted to Big Brother and remembers every single thing about it.  He walks on his toes.  He lays down in weird places.  He is socially kind of a misfit.  But no one says he has autism.  And when they do talk about him, all of the others, they talk about how creepy he is!  Like, they say, "he's so creepy!  He walks on his toes!".  As if that's the creepy part!  I mean, who cares?  WHO CARES?  
  • All evidence to the contrary, things are going okay with us.  Anthony is always better in the summer, even if it does mean horrible temperatures this year.  
  • What else.  I put Felicity in the tub the other night and Anthony wanted to come in so I let him.  LORD LORD they were cute in there together!  It's too crazy to take a picture but you'll have to imagine it.  Felicity splashing away and leaning over and blowing on Anthony's arm.  They were really lovely.  You could tell he prefers quiet Felicity to those other blowhards he usually has to bathe with, ha!  

Wednesday, July 04, 2012

Happy Ending

So this five year old in Wisconsin went missing and he was found by a man from his community and the guy's DOG, which is amazing, right?  Such a miracle, it's so hot here and sunny.

I cried and cried reading about the boy being found.  He's five, he had a diaper rash, he doesn't communicate by talking, they said, which I guess means maybe he's a good communicator but it doesn't do him any good if he's lost!  He can't show a picture for help!  If a boy with autism shows a picture but nobody sees it, has he communicated at all?  A question for the ages.

Anyway, he likes the Wiggles and singing The Wheels on the Bus, and waah waah I cried reading that, just like Anthony.  What is it about the Wiggles and kids with autism?  Just today Anthony was getting upset and Mike put on The Wiggles for him and it made him laugh and laugh.

He has been climbing up on the window sills lately and it's driving me insane.  He went upstairs to my bathroom before and got out the toothpaste and when I found him, he was standing on the window sill and had a qtip in his mouth, like a toothpick or something.  It's so weird, this new thing of standing up on stuff.  He wants to get higher and higher - today he was standing on the coffee table trying to get to the ceiling fan.  What do I do?  What do I do as he gets taller and can reach that damned fan and tear it down?  I don't know.

My mom was here and she asked what do they say at his school about it?  I mean, they don't say anything!  I don't know that they could.  He doesn't do it at school, even if he starts to, they probably just get him down, seeing as they are one therapist with one child and they can just be with him all the time.  I can't be with him all the time.  Mike was putting the baby down for a nap.  I had my family over to grill out and celebrate the 4th of July, I was doing stuff.

Earlier today he had an accident outside and my lord.  MY LORD, the mess was unbelievable.  I was on the phone with my mother and I heard Mike say he was getting the wipes, so I got off the phone and saw that he was cleaning Anthony up, and I went to wash the bottles and saw out the window that there was a mess on the deck - and without getting into it too much, let's just say that there were about 1000 flies out there too.  So I went outside and Mike and cleaned it up - it is so freaking hot here that it made it worse, and it was EVERYWHERE.  EVERYWHERE!  It was on the floor of the deck and in the grooves of the deck and all over the picnic table and bench and on Veronica's shorts that she had left out there and on the hand rail of the deck and on the spindles of the deck and on the freaking sit and spin and - I mean, it was everywhere, it took forever to clean up.  In the meantime, of course, Anthony was inside and PEED on the floor!  I mean really!

So.  It's hard.  It's HARD.  It's messy and it's expensive because as I said, I'm afraid he is going to break all the window sills and then we're going to have to replace them and then I'll never get my kitchen work done!  But you know, I don't really care about the kitchen, or the windows, or the poop, really.  When we have a day like this and I get so worried, I'd rather be worried about something tangible like poop - something that can be literally cleaned up and wiped away, because if I think too much about what this means for my life, or what it means for Anthony's life, or the other kids' life, I will go insane.  Because the truth is, no one has any answers for us.  And in turn, I don't have any answers for Anthony.  But we are working on it.  I am hopeful that we can figure out something else for him to do instead of climbing on all the damned furniture to fulfill his sensory needs or whatever, before he gets too tall to do too much damage to our house or himself or the girls or me or Mike.  I'm hopeful but that's it.  I don't know what the future holds but right now it's not looking good.

Hmmm.  That's not a very cheery way to end this.  Oh, Anthony was in a parade at his school!  It was so cute, I'll post the video.  That will be a good note on which to go out.  

video





Monday, July 02, 2012

Huffington Post

So today I read that Rob Schneider, of Saturday Night Live and Deuce Bigalow, Male Gigalo fame, thinks that vaccines cause autism.  The Huffington Post, which published the story, is all snooty about celebrities daring to say anything about vaccines and autism, which is funny, because just a year ago, they published a story by none other than Jenny McCarthy.  What a bunch of jerkstores.

I don't know that vaccines didn't cause some kids' autism, but it's certainly not the case with Anthony.  Anthony has had autism from the beginning of his life, maybe before he was born?  I don't know.  Maria had the same vaccines, probably MORE than Anthony did and God knows she doesn't have autism.  Veronica is the same, vaccine-wise, and I'd say she has some sensory issues, but she definitely doesn't have autism.  Felicity had FORMULA and vaccines and so far - NO AUTISM.

But I'm not saying that because this happened with my family, that it's happened or NOT happened with anyone else's.  I don't know.  You know why I don't know?  Because my degrees are in theater and information technology, not in medicine or science or vaccines or autism.  As far as I know, Jenny McCarthy is not a doctor or a scientist, or, I'm guessing, a college graduate.  If she is a college graduate, someone should tell that college to teach a class in Science is Not Bullshit.  Anyways, I'm just saying, shut up Huffington Post.  I am a person who is dealing with the effects of my son having autism.  I am trying every day to help him and love him and prepare him for life.  It doesn't help to publish NONSENSE from IDIOTS.

Sunday, July 01, 2012

Sunday night catchup


I let him do anything he wants, practically.  Mike took the girls to see a movie on Saturday and I was home with the baby and Anthony and as soon as they left, Anthony got upset.  So I put on the Wiggles and lay down with the computer in front of me and the baby to my side and Anthony sat on me and watched the Wiggles and seemed really happy.  I took this picture because - it's just so perfect, isn't it?  My cousin John commented on Facebook that there's a metaphor for parenting in here somewhere and I agree.  

The funniest part of all of it is that he was sitting on me and I was doing stuff, playing with the baby, looking at the computer, etc., and he was up and down.  Sometimes he was sitting on my legs, sometimes my back, I wasn't really paying attention.  Then at one point, he sort of shifted and hurt me and I turned around and said, HEY Anthony!, and he was completely naked, ha!  

I had a meeting at his school this week, we are going to work on a new - well, not WE, not ME, Anthony and his therapists are going to work on this PECS system for communication.  We have had some experience with PECS and none of it is good but we never did it fully, I could never really get it going.  It's a rub, kind of, because you of course want Anthony to have his voice and I suppose maybe it feels like failure to go to a system like PECS, where he'd use pictures to communicate his wants and needs, but I don't see it that way.  I have long ago decided that if it takes SO MUCH for Anthony to talk, if it takes, say, all his energy for the day, then if we can find another way for him to communicate so he has some of that energy, then that's what we should do.  That's what I should do, as his mother, is take care of him and help him.  

He is eating hot dogs lately!  He is pretty happy, overall, he loves the summer.  We fenced in the yard a little so he can't get back to the trees/bugs/poison whatever in our yard so that's good.  We are really happy with the situation at school, I like all his therapists, his people at school, which is just great.  Felicity doesn't hate the car so much anymore so it's even going good to go and get him.  But that is all I'm going to say, I don't want to jinx it.