Saturday

Well, we made it through another week. I wouldn't say he had a great week but actually I am sick of grading his life, so I'll just say we made it through another week. Anthony is off from school on Monday AND he has no swimming on Thursday so it should be interesting. It's hard to believe summer is starting, especially considering this stupidly cold and rainy weather we've had. It's cold and wet today but it's supposed to be 90 tomorrow.

In the time I've started this, Anthony has really been going crazy with the tantrums. It's - it's so difficult, not even 11:00 in the morning and already everybody is crying about something. I am trying, trying to not end every freaking entry on this blog with such BAD NEWS but .. well there is nothing nice to say, really. He has a lot of cute clothes. I bought him new pajamas. His hair looks great. He likes to run and play chase with Maria. He was sweet and happy when he woke up this morning. He is strong and brave.

Oreos

Oh this child and these cookies.  This is *after* he's eaten what he wants.  Here's what happens:  he turns the corner cabinet around so he can use the shelves to climb up on the counter, then he stands on the counter and gets the oreos down.  He sits down and opens each cookie and takes out most of the creamy filling, and repeat repeat repeat until he's caught.  He was only alone in the kitchen for like five minutes!  We go through a lot of Oreos.  

I try and make him eat the ones that he won't - after all, it's not like it's LIVER or something.  I watch Amy make him eat that whole cookie before she gives him another one, but we are a little looser here, especially around dinner time, when we are messing with the girls, too.  

He is doing well, we've had some late nights and early mornings but overall he's doing fine.  I am trying to appreciate the good times with Anthony so I can think of them when he's having a hard time.  It's working, I think.  

Same Kid

This is the same kid who was yelling this morning, yelling this afternoon. He is truly this happy when he's happy and truly that sad and mad when he's sad and mad. It's ... crazy, is what it is. It's good, though. Because even when it gets really hard and he gets really sad and then *I* get really sad, there's this boy. He's always in there, smiling away.

400 Days

It's been about 400 days or so, 400 days of tantrums every day.  It's been like ... 60 Sundays, Sundays full of - the best way I can describe it is like rolling storms, rolling storms of tantrums, crying and screaming and crying, and flopping to the floor and crying and self-injurious behavior, on and on, it never stops.  We have had maybe ... five days off from the last 400?  That's not enough.  Some times I think we are not going to be able to do it.  Sometimes I think about having a little baby here and this all going on and I just - I know I can't do it.  I don't know what we're going to do.

I try to think, well, we are working on it.  We are seeing improvement.  But that's a lie.  No one knows why he is having these tantrums, and even though he is pointing at the iPad and putting on Signing Time when he wants it, he is still having these tantrums.  Even though the weather is warmer and he can go outside, he is still having these tantrums.  Even though everything, he is still having these tantrums.  No one can help us and no one knows what to do.  Sometimes, just to amuse myself, while he's screaming, I say, "Anthony, what do you want?  What is the function of this behavior?  Let me gather some data and make it better".  That's what we're doing at his school.  We are trying to figure out the FUNCTION of the BEHAVIOR. We are GATHERING data and making CHARTS.  We don't BELIEVE in SENSORY ISSUES, we believe in BEHAVIOR.  But when I ask Anthony about his behavior, strangely, he doesn't answer.  He doesn't know and I don't know and no one knows.  So.  I am trying to think of a way to put a good spin on this but there really isn't a way.  It just sucks and it's sucked for around 400 days and I see no reason why there won't be 400 more and 400 more and 400 more, the end.

Moving

He is not much of a layer-arounder, I'll say that. He has been walking the backyard for a while now. He went to bed early last night and rose EARLY this morning, before 5:00 I guess. He was unhappy at first, I went in and covered him up and rubbed his back and he calmed down, but he didn't go to sleep, just knocked around in his room until Mike got him. He's had a few episodes already but right now he's good. Lord, he is a pain. If he wants apple juice, he gets up on the counter and gets the pitcher, then sloshes it in to wherever I'm sitting, juice flying everywhere. Then he'll have the TINIEST sip, 1/100th of what has already spilled, and - just ugh, it's apple juice, it's so sticky and gross. Anyways, he's fine. He had a good week, overall, I shouldn't complain.

Yesterday for home therapy we hung out for a while and then the girls woke up and we went to a garage sale. My friend was selling a double stroller and I want one so we all piled in the van in search of the sale. At first we went to the wrong house, but finally we found it. There was a dog at the second sale, and Amy patiently walked Anthony up the driveway so he could get near the dog. He's doing pretty well with it - he still doesn't like it and he will never hug you tighter than when there is a dog around, but mostly he was really brave about it. We went to McD's after and got some chicken and fries and a shake for Anthony and he did great, just great. Apparently, he got so mad about a lack of cookies last night that he kicked off a cabinet door in the kitchen, but except for THAT, he had a good day yesterday.

He is so much more tense than I would like to see him, I wish that he was my simple little happy boy but he's not, right now. I mean, he still is that boy, he's still in there, but he's just super grumpy sometimes. I am, too, and I used to be much nicer, so I know how he feels. Ha, and probably I know how my mother feels too!

Wednesday

He's been upstairs for two minutes and he's crying already.  Maybe he's mad that he had to go to bed?  Sometimes I have to put him to bed because I can't take him messing with stuff anymore.  Lately he has been really into our large spoons.  He takes them out of the drawer, plays with them a little, and then drops them wherever he is.  It's crazy making!  He's been having good days at school, he has a new therapist and it seems to be going well.  I never know who at his school reads this blog so I just pretend nobody does and it keeps me relatively honest.  That said, I like her too.  She's lived and worked in NYC, which I of course like.  :)

I am worried that he needs more OT, we are working on a plan and I hope it comes together.  I know his sensory issues are responsible for so much of his ... other issues, I am trying to make something work.  I am going to get him a swing, I should just order it tonight.  I have a cold and have for the last ... several months, it feels like, so I am dragging.  I can't ever do anything on the computer, or at a desk, while the girls are up and today when they were napping I exercised, so I feel like I've accomplished nothing.

He is crying and crying.  I guess I'll go up soon.  I hate to hear him cry, especially right after he goes up!  Tonight he said "good night" and "I you" when I prompted him, maybe he's mad about that.  Maybe he takes it back?

I was reading some of Temple Grandin's book and in it, she says how if there were a way she could flip a switch and not have autism anymore, she wouldn't do it.  When I read that, I thought, that's why I have such a problem with the talk about magic pills and how we'd take away our kids' autism if we could.  It's not mine to take away, I figure.  It's Anthony's, and when I talk about what I would do or not do for him with regard to taking his autism away, I'm focusing more on me than on him and I don't think that helps him or me.  BUT I wish I could take all of his pain away, all of his frustration and anger and tears.  But doesn't that just make me a mother?  Doesn't everyone wish that they could take away their children's pain and fears?  We can't, though.  I can't take away Maria's pain that she gets when I don't let her do whatever she wants.  I have to teach her how to get through life, even a life in which she can't make everyone bend to her will.  It's the exact same with Anthony, only more ... intense.

I am going to go see if maybe he is hungry.  How I wish these fools would eat at dinnertime and not leave all their pecking for right before bed, after we've brushed their teeth.

Just you Wait

I've been reading blog entries lately about people who say "Just wait!" about whatever stage you're in with your baby, and warning you about how much WORSE it will get.  Like when you're pregnant, maybe you'll say you're tired.  And they'll say "Ha!  You think you're tired NOW?  Just WAIT - you don't even KNOW TIRED!".  Or maybe you've had a fussy-poo baby, and you say, "well, we had a very rough time with our baby, but we learned some coping strategies, for us and for the baby, and now things are better".  And they say "Ha!  Just wait until the baby starts TEETHING!  Just wait!  You don't even KNOW FUSSY!".

First of all, it all makes me think of this excellent song. Secondly, I am in shock that people can be such giant, giant jerkstores.  I think about when I was pregnant with Anthony, and people used to tell me that all the time.  Alllll the time.  I did have some trouble sleeping and I would mention that I was tired and some people would tell me that it was to practice for when I had the baby, so I knew what it was like to be so tired.  And I would think, can you hear the words that you're saying?  Why would I need practice to be TIRED?  I have been out until 3:00 in the morning and then gotten back to work at 7:00, FOUR HOURS LATER.  I know what it's like to be tired, you big dummy.  WHY do people feel like they have to TALK so much?

When Anthony was so fussy and crazy when he was small, and I never slept for that first two months or whatever, it was obviously hard.  I never once thought, thank God I practiced being so tired!  Phew!  I really know how to do THIS!  No, I thought "I wish I could have slept better during March, April and May so that I wasn't so bitter about missing so much MORE sleep now".  My friend Susie, a girl I've known since we were fifteen, called me when Anthony was days old and I didn't take the call.  I didn't want to talk to anyone.  I felt SO dumb, so unprepared, so miserable.  I couldn't fake my way through a conversation with such an old friend.  So after a few tries, she left a message and said, pretending to be my voice mail message, "Hi, this is Joanne, I can't come to the phone because I'm so tired I can't see, quit calling me!".  I called her back and we chatted and she said "I wish I could have told you about the tired, but you can't tell anyone".  It made immediate sense to me, I wouldn't have believed her.  How do you explain that to someone?  How do you say "you're going to have a baby and maybe you'll be in labor for 24 hours and then you'll have a c-section and you'll throw up and be sick and the nurses will be so weird and every single person that comes in your hospital room (and there will be thousands) will have different advice for you and you'll be so confused and sad that you won't be able to see.  Then you'll go home and the baby will start screaming and he won't stop, it will feel like, for several months.  Good luck!  Happy baby shower!?  Ha!

My long-winded point is this - there is no way I could have been prepared for motherhood, but there is REALLY no way that I could have been ready, been prepared, to be Anthony's mother.  I couldn't be his mother until I was his mother, if that makes any sense.  It's a very personal thing, to be someone's mother, especially someone like Anthony.  I had no idea what was in store for us - I still don't!  So it doesn't do any good if anyone says "just wait!" to me, about anything.  What are my options?  To not wait?  To ... fast forward?  To quit?  If we have a good day with Anthony, a good HOUR, I'll take it.  And if the next hour or day or year sucks, I'll take that too.  So if you're tempted to say "just wait!" to someone who is talking about a rough patch with their baby, just shut up.  Think and take a deep breath and shut up.  Go get a journal and wtire about how smart you are and how much you know and leave everybody alone.  Because it's not kind and it's not helpful and there is no point.

Monday

I stole this list, I figured it would be a good way to report on the happenings around here, regarding Anthony.

Outside my window…  it is sunny, but it's supposed to (sigh) rain later.  It's also supposed to be in the EIGHTIES tomorrow and Wednesday, but of course colder and rainy this weekend for Veronica's birthday. 

I am thinking…  about Anthony, at 3:00 this morning.  Mike and I went to sleep around 11:00 and he was still making noise so we couldn't go in and turn off his light.  Mike had changed his dirty diaper when we went up, around 10:00, and he had been pretty good all night, so I wasn't worried he'd be upset, I just hate to leave his light on all night.  Anyways, I went in at 3:00, when I woke up, and he greeted me at the door!  I almost fell over from shock.  I don't think he was awake for long, he looked so sleepy.  I think maybe he fell out of bed and was wandering around and maybe that's what woke me?  I covered him up and out he went.  He slept until we woke him at 7:30 this morning and was really sweet all morning.  

I am thankful for…  flexibility.  They are adding in some OT work for Anthony at school, twenty minutes at the beginning of every shift, so twice a day, and I am hopeful it helps him.  He had a pretty bad day yesterday, woke up sad and sort of stayed in and out of it all day.  

From the kitchen… I have no idea what we're having for dinner, it's a bad habit but I am sick of making dinner.  I swear, if I never had to cook again it would be too soon.  I think it's worse now because no one eats what I cook except for me and Mike.  I know that I should make them eat what we are eating but they would seriously not eat if I did that.  Veronica is pretty good and she'll try everything but that's it, she tries a bite or two.  I have to get more organized about it - maybe this fall?  Ha ha ha boo hoo that's a joke.  

I am wearing…  a black maternity top and yoga pants.  I am in need of maternity clothes earlier and earlier with each pregnancy.  

I am creating… a party for Veronica this week.  I ordered cupcakes but I have to get paper plates and napkins, clean, get some dips, etc.  

I am going… to go to sleep early tonight.  I woke up around 3:00 and never really went back, in and out of sleep until I got up at 6:15 to go walking with my friend Vicki.  I'm always glad to get exercise out of the way but I am SAD that the girls fell asleep on the way home because that means no nap for any of us this afternoon.  I am BEAT.

I am reading… Something Borrowed, recommended by some of my friends on Twitter.  I'm enjoying it, it's ... well it's a lot simpler than Something Something Goon Squad (I can't remember the title, so tired) which, as my sister said, you needed a CAST LIST to read.  

I am hoping… that we have a breakthrough with Anthony here soon.  I really want him to stop having these tantrums.  I am seriously PRAYING on it here lately.  I'm sick of them and I also don't think they represent who he is.  

I am hearing… Maria ask me to play puzzle with her.  Since she can't read and doesn't know the blog address here, I'll just say that NO I DO NOT WANT TO PLAY PUZZLE.  NOOOOOOO.  I'll probably do it anyways.  

Around the house… there is a giant mess.  I clean and clean and do laundry and clean some more and it's just - messy.  I'm trying.  I have to get rid of a bunch of clothes that don't fit (me, the kids) and get some summer stuff pulled out (the kids) but the thought of it is very daunting.  

One of my favorite things…  It hardly ever happens, but one of my favorite things is when Anthony has a good day but I don't realize it til the end of the day.  It's such a sweet surprise.  

A few plans for the rest of the week… I am going for a checkup with my OB tomorrow, Maria has her last day of preschool on Wednesday, Anthony has swimming on Thursday, and Veronica will be two on Saturday.  So it's a big week, kind of.  

Here is a picture for thought I am sharing…

 Lately I've been reading stuff on the internet about 'if there was a magic pill that your child could take and it meant they didn't have autism, would you give it to them?'  I find it so offensive, on so many levels.  I mean, there isn't such a pill.  But I suppose if there were AND if I could be guaranteed that Anthony would be the same person, MY person, I guess I would.  I want him to not have any pain any more, I wish he were able to talk better, I wish his future were clearer and better, I blah blah blah want want want wish wish wish.  But this is who he is, I mean, I believe in God, and I believe that Anthony is who he is and I should be happy with it, right?  Temple Grandin said, when we saw her speak last week, that autism is buried so deep in the dna and genetics that it will never just be poof! cured.  So is it a big part of who he is?  I don't know.  It think it's a dumb question and I hate it.  I want to love Anthony just how he is and also want the best for him and also want people to not be jerks and not insure some people and not bully people and to accept that some people are different and that neuro-diversity is good for us all.   There's no pill that can do all that.  

Friday

Anthony has really been enjoying the driveway lately. He's been very good about staying in it, and not running into the neighbor's yard, which was a problem for both him and Veronica but it's better. He had a good week, although he's tired by now. His speech therapist said that he cried this morning, then fell asleep for 5 minutes, woke up and was ready to work. Ha! That's all he needs, five minutes. I wish it were that way for me!

Well

I feel bad, though, taking a break. I have these pictures of him and I don't want to miss anything, so I am going to just post them, I guess. He is doing fine, his hair is as awesome as ever, anyway. They are trying to do more sensory input moves for him at his school, we are going to see if that helps. So far, things are just the same. He loves his iPad and loves especially the Signing Time app that I bought for it. We went to a park last Saturday and he loved this one swing that they have, so I am looking for one like that. We are marching right along, things are the same as ever. I went in to get him dressed this morning and he was sleeping there, so beautiful and sweet and so, so peaceful, I just couldn't do it, I couldn't wake him up. I am so afraid that if I wake him he's going to scream and cry, so I thought I'd give him a few more minutes of peace.