Hair Don't

I'm afraid we're getting to a decision-making time with Anthony's hair. It's getting so long. It's better this year than last, because they are doing a hairbrushing program at Anthony's school and it never gets knotted or anything like it used to. Also my sister gave him an awesomely awesome satin bedding set and that pillowcase really helps. But it is getting long, right?

I am just trying to keep my mind off the fact that he is doing his horseback riding thing today at camp. I am so, so nervous about it. It's just like being a regular, Mom, being a mom of someone with autism. Like it can suck more, and it can be better, but mostly it is the same. He is off to camp for the first time and I think about him all day and I talk to him about it at night and I am so nervous and so hopeful that it will work out. Only instead of hoping he'll meet a friend or something, I am hoping he doesn't get too freaked out when they put him on a horse. I just hope he isn't scared, I hope he does well, I hope I hope I hope.

Day Three

Camp is going very well, he seems to be having a good time.  He doesn't eat much when he's there - he is eating more every day but the first day I think he ate almost nothing!  The second day I asked Mike to talk to them about how he was eating and he did but I think they are sitting with him and eating, he just must be ... nervous or something there and anyway, he hasn't been eating much but animal crackers, ha!

He hasn't really had any 'behaviors' or 'tantrums' or whatever you want to call it since Monday.  This is perplexing because - well, I mean, if he wants to go to camp every day of his life, that's not going to work out, is it?  We all would like to hang out all day and jump around whenever we want and eat animal crackers, am I right?  We are just grateful that he is doing well, I am trying not to think too much about it.

Tomorrow he has horseback riding.  I hope and pray it works out.  Hippotherapy can be so great for kids with autism, I ... well, it would be nice if he likes it, is all.  I'm just going to take it one step at a time and hope he likes it and that he gets to DO it.

He is funny, he is used to getting up and leaving, and now he's been going to bed pretty early this week and getting up early and then he has all this TIME to sit around in the morning and he doesn't like it!  He is always pulling on Mike's hand, toward the door.  This morning Mike took him to get a bagel before camp, just to get him out of the house, ha!

So if you are thinking of him this week or praying that he does well, it's working.  We are very happy that it's gone this well so far.  Ha, as I say this he is sort of yelling in his room but I think he's probably just tired.

Happy Camper

He did really well today!  It wasn't a normal day because it stormed a lot this morning, so they told Mike they would just do a lot of Gross Motor Room stuff, which I'm sure was fine with Anthony.  He was happy to see me when I went to get him, but not too frantic, he seemed good.  He had a good afternoon and is still up, here at almost 10:00 but overall he seems happy and content.  Which is just like I like him.  :)

Incredible

Anthony's therapist Kristi sent me this picture. She took it when they went on an outing this week, they were at a park and she said what a great time he had. This picture is amazing, to me, I can't stop looking at it. When I look at him and I know that he can be happy, that he can be at peace and laughing, I have to keep trying to do everything in my power to keep him that way, at least MOST of the time.

He had swimming today and it's going well, Mike's been taking him so I only have his word to go by, but he is pretty trustworthy, ha! He starts his camp this week, I am a little nervous but mostly excited. I keep talking to him about it but even if he did listen to me, he has no reference, he's never done anything like this before. I just hope it goes well, I hope he has good weather for it and I hope above all else that he likes this horseback riding that he'll be doing. I am long past expecting us to have a Rosebud-type epiphany where everything is just poof! all better, but I hope that hippotherapy is something that could be beneficial to Anthony and that maybe if he likes it, we could do it again. We'll see. You never know, as my nephew Parker used to say. You never know.

Sleepy

Ooh he was tired this morning! He fell asleep super late last night, then he was up crying at 5:30, and then fell back to sleep and then wanted NO part of getting dressed and ready at 7:45. Mike carried him downstairs and it was like carrying a big, tall sack of potatoes or something. He is feeling better, obviously, if he could stay up all night like that, I guess. He had a field trip today to a park and it's a nice day so hopefully that went well. Otherwise, no news. He starts camp next week, his toilet training has been pushed back to start on 7/25 instead of 7/11, which sucks, but what can you do? I'm eager to get started so that seems far away, but it will probaby be here before we know it.

Sick

Ugh, this poor baby was sick this weekend, and into yesterday.  We knew something was weird when he got right into bed after his bath, pulled up his covers, and went to sleep.  Mike and I were looking at each other, like what in the WHO now?  But he was very plucky, even though he didn't feel good.  He just slept and rested and would come downstairs every now and again and eat, and then right back up.  He probably didn't have the energy for any real protests.  He is always sweet, but never sweeter than when he is sick.

BUT he's better today and back at school and since I haven't heard anything, I'm assuming he's doing fine.  Speaking of school, I guess I am not going to talk about it anymore on this blog.  It's hard, because I've been documenting his life for six years on this blog, but I am seeing some verrrry strange searches that lead people here, like one said "anthony autism blog little star center".  Um, I can't imagine, who could that be? :)  I started Anthony's blog so that my friends and family could see what our lives are like, so that my family that is far away could see the kids' pictures and feel like they weren't so far away.  It's become important to me to say what's going on in our lives, in Anthony's life, because I lose perspective when I am in it and don't have anyone to talk to.  But I'm afraid it's going to be used against me, against Anthony, and I can't risk it.  I am thinking about just moving the blog to a private list, but I honestly don't have the time to enter all the emails of people who look at it, etc.  So I'll just not say anything about what's going on with Anthony at school, or at least try to keep my opinions out of it.  This is challenging for me, as you can imagine, ha!

Saturday

Anthony is off to swimming, his second Saturday.  I think it's better to go on Saturdays.  He has been waking up kind of rough lately, and it's nice to have somewhere to go, especially somewhere he really likes going.

We had a tough, TOUGH week.  I wish I could report better news on his blog, but I have to go with the truth.  He woke up at 4:00, 3:00, 2:00, 11:00 (pm) and some other ridiculous time this week, and he's been mid-tantrum when he wakes up, so it's very upsetting to him and takes him a long time to calm down.  Mike has been working, the girls have had their regular schedule, so we are both really tired and finding it hard to cope with our regular lives.  Some verrrrry disappointing things have been having at Anthony's school, too, so it's been a very tough week.

BUT he went to the splash park yesterday and I heard he had a very good time.  I was worried he wouldn't be able to go because there was a chance of rain, but it stayed nice and off they went.  Also, his afternoons have been okay.  We got his swing installed and although it's not perfect yet, he really likes it and that makes us all happy.  I'm trying to think of other positives.  His hair is looking excellent.

The things that have gone down this week at his school have been painful, for sure, but there is a certain freedom in finding out who people really are.  Mike and I have been sort of blindly going along for a while here, even though we've been unhappy with this or that, we have tried to maintain some sort of status quo for Anthony and hoped that things would get better.  But if we're honest, we have to say that it's not really getting better for Anthony.  I look back through the last year and it's been tantrum, tantrum, lack of sleep, tantrum, misery, tantrum, tantrum.  That's not making a judgment on it, it's just how it's been.   I am at a point where I am almost *afraid* of him, I am always wondering and guessing how he's going to be.  I just - I don't think it should be like that, for him.  And I think we need to have Anthony surrounded by people who don't think it should be like that either.  Who don't just say to me, "that must be so awful", or "as the parent, it must be really hard to see him like that".  Um, of course it's awful for us, but you know who else it's awful for?  Anthony.  As his parents, we have to fight and get him the best care and therapy that we can get him.  We are here to take care of Anthony and anyone who is helping us but failing - well, we just can't have it.

Anthony has *autism*, this is the fact.  I can't expect him to behave any other way than the way that he behaves.  I do, however, hold supposed experts to higher standards.  I am sick of putting so much of this on me and Mike and especially on Anthony.  We're just not going to do it anymore.  We're going to demand better help for him and if we can't get it where he goes to school now, we'll just figure something else out.  I'm disappointed in how we've been treated, but in a way I feel very free and able to help Anthony in a way that I haven't in a long time, if ever.

So we're going to plug away and try and continue to get Anthony the best treatment we can.  He has one more week of school and then he is off for two weeks for camp, which I think will go really well.  Then he starts back at school and they are going to start toilet training in earnest.  So I'm bullish for the future, once again, but I'm actually LOOKING at the future in an honest way.  I'm a smarter and wiser mom, or something.

Sleep and Tantrums

One thing I have been grateful for (seriously, there's just the ONE thing, in my whole life, ha!) is that although Anthony has tantrums, and although he can be a bad sleeper, he would rarely have a tantrum when he should be sleeping.

That has changed here lately.  I am praying and praying and hoping and reading and working and trying to make it better for him and instead, it's getting worse.  A few weeks ago, he started waking up in a tantrum, around 7:00 or whatever.  So it stunk but at least we had stuff to do, we got up and got him dressed and he went to school.  This week, we are reaching a new low.  Sunday night he went to sleep around 10, I guess, and woke up at 4, which seemed super early to me since Mike and I stayed up to watch The Killing until 11.  He had a giant meltdown, was so upset, for almost an hour and then he calmed down but was awake for the day.  Monday morning he woke up at 3, same way, upset and then up for the day.  So when he started screaming this morning, and I looked at the clock and it was TWO, I was surprised but not really.  I have never had this experience before - where every time I think it will get better, where I think it can't possibly get worse, it does.  And it does with a BANG.

He did go back to sleep at some point this morning but he got upset on the way to school.  It's like there's more and more time where he is having a tantrum and less time where he is just happy.  It's so bizarre and it's beyond depressing.  It's also worrisome to me because I am trying to get some rest, because I am having a BABY who I am supposed to be taking care of.  I just - I don't know what the answer is, here.  I am thinking that if I had my own house, or apartment, that might be a good start.

BUT here's a picture!  Anthony has a new(ish) therapist, Kristi, and she is with him on MWF mornings, so she is going to be going with him on most of his outings this summer.  I asked her if I could post this picture, it's so gorgeous, such a great picture, and Anthony really looks like he's having fun, right?  I wish I could impose it on the inside of my eyelids so when I closed my eyes I could always see him so happy.

Six

So Anthony was six yesterday! He had a better day yesterday than he had in a while, largely because he went to sleep the night before at a decent hour. The two nights before that, Mike and I inadvertently woke him up and then he had large, amazing tantrums for a LONG time before he fell asleep. It was around midnight both nights, which is way too late, plus it's just an awful, horrible way to go to sleep. For him and for us! He had a good morning at school, he had what I guess was a pretty bad upset right when he got home for therapy, and then we had a pretty good afternoon and evening. He doesn't really like sweets so we tried an ice cream cake, an oreo one, but everyone liked it but Anthony. More for us, we said, ha! We bought him a swing for his birthday, actually my parents and Laura went in on it too. I'm going to go to the hardware store this weekend and figure some way to hang it. I hope he likes it but I bet he will. The thing to do now is to keep it away from his sisters.

I feel bad because I honestly can't be like, "it's all gone so fast!" and "where has my baby gone?". I mean, I have been here for all six of these years and they felt like six years! I don't have whatever gene there is that makes a person wax poetic about what can be very long days and nights. But it does surprise me sometimes, when we put a pair of shorts on him, and these giant long legs stick out of it and I think 'whose legs are those?'. Who is this little man? And why is his hair so long? But mostly I can still see that little baby in there, I will always think of him as that little baby, when it was just him and me for so long. I think of us going for walks and just being together, the two of us. I know that little baby is still in there - ha, I'll probably be like that old woman in that I'll Love Your Forever, the one who drives across town and gets the ladder and climbs up into her son's house to rock him like a baby. Anyways, happy birthday Anthony! We couldn't love you more and we look forward to the coming year. And maybe a few less tantrums. :)

Friday

Plodding on. It's just a few weeks until Anthony starts his summer camp. I saw this nice piece about Easter Seals Crossroads, who run the camp that he'll be going to, so that was nice. He had a pretty good week, overall. He has been upset every day for some amount of time, but really, it's like the new normal. I mean, it's been well over a year, I guess we should probably just accept that this is the way that it is. I'm too tired to do anything else or try anything else on my own.

We are going to start working on toilet training, at least at school, next month. I think that there are definite signs that he is ready. I want to talk to a friend of mine's sister in law. Her son has autism and she toilet trained him so I am looking for information if anyone has any! I do feel like Anthony is ready, but I just don't know how ready. I mean, it has to mean something that he is always taking off his diaper, right? Taking it off and peeing? I hope so. I feel more confident now that Maria is trained, I think maybe it's not me. Also, I really don't want Anthony to be an adult in diapers. I really don't. I feel like I have to do this for him. I mean - they would all be peeing freely like dogs or something if I let them, but I am here to teach them how to live in the world and that includes Anthony. Sometimes I get the sense that people think, well, we'll try it, but I want to do more than that. I want to try one thing with Anthony and if it doesn't work, I want to try something else. I know how smart he is and I know he is all in there somewhere. I just have to keep prying away to find out how to get at him.

In gorgeous news, look! Isn't he so cute and grown up looking! Sheesh! Six years old next Friday! I feel every single day of those six years that's gone by, so you won't find any b.s. about boo hoo hoo, it seems like yesterday, and where has my baby gone? type stuff here. But I am ... I feel so happy that we've made it six years! Here's to six more! And repeat, repeat, repeat, ad nauseum.