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!  :)