Rare Sighting

I know this is blurry but I have to post it. He is rubbing her head! He loves her, deep down, and lately he's been into rubbing her head. We went to Mass today and I was holding her, cradling her, with her head facing where Anthony was and he rubbed her head and then WHACK, WHACK, WHACK, he sort of popped her in the head! HA! She didn't even blink, it wasn't hard but it freaked me out. She looks like him, to me, and maybe he recognizes his own. Or maybe he's getting more used to use bringing home a baby girl every two years or so, ha!

He has been doing well, I was telling ... either my mom or dad, I can't remember, that I feel like I hardly see him anymore. He leaves for school at 8:00 in the morning and I go get him at 4:30, we come home, have dinner, take baths and go to bed, basically. And sometimes he's not that pleasant just during those short periods of time! But mostly he is and we've had a good weekend, he's swimming again on Thursdays, which he really likes. He was very, VERY good in church today, we all six sat for almost the entire Mass! Mike and I barely looked at each other, we so didn't want to jinx it.

Oh, my friend Elvina, who I used to work with in New York, wrote this incredible piece about having another child after your first has special needs. She is a beautiful writer and I recommend her blog anyway, but this piece is just amazing. It really touches me. If anyone ever asked me how I dared to have more kids after having Anthony, and believe me, THEY HAVE, I always say the same thing - I love Anthony so much and he really has done more for me than he's taken away. YES he is exhausting but so is Maria! So is Veevsy Voo! So are they all, so was John (ha ha) to my parents! He is my first baby, I will never ever be the same after I had him, and then we had the chance to feel that feeling four times in our marriage? I - I don't get the problem. Yes, I was wracked with fear through the other pregnancies that I had. I suppose I am grateful that I have girls after Anthony because they are less likely to have autism. But that's just details. It's too much to talk about human beings like they are not complete miracles, I can't do it. I can't say, well we could have a non-special needs baby, so we'll RISK IT. Of course, we are just merrily having all the children that God gives us, but I feel lucky that I never had to really make a choice like that. I THINK I'd decide what we've decided, but who knows? Anyways, I thought it was a lovely piece and she's a great writer and I miss her a lot, so here it is if you want to read it, too.

Long Time

I have so many thoughts when I see this picture! I was just looking through Picasa tonight, trying to find a picture to print out for Mike's grandmother's letter. Here are my thoughts:

I loved those pajamas, I wore them OUT. I had two pair and it was such a uniform for me. They were from Target and I never found another pair that I liked as much, to date.

I look so freaking young, don't I? I do, trust me. I had long hair. I look pretty thin, too. Waaah!

Anthony was so cute, so OVER me all the time, he looks kind of mad, right? But look at his sweet mouth and cheeks. He had more hair as a baby than any of them.

I can't believe this was six years ago. I can't believe I used to think how much easier it would get. But it doesn't really get easier, just hard in a different way.

I bought him a new pool for a ball pit. I swear I am going to make it my LIFE'S WORK to make this ball pit work for him. It's a giant pool, 110" long, it's almost as big as his bed! It has higher sides and he can really get in there. I'm going to get more balls for it. What he does right now is climb in and rub his belly on the sides, which is good. I mean, he likes a smooth surface and better the pool than my belly, ha! But then he starts throwing the balls out of the pool, which, ugh, is NOT the point. So I'm going to try more balls and see where we go from there. I know I have said balls a lot, I can't help it, ha!

Video

Here's a video a friend of mine sent me.  I hadn't seen the original clip, but I have heard about this girl.  It is amazing to me, and heartbreaking.  I would love to think that Anthony will communicate like this with us someday.  I really have no reason to believe he won't, he is obviously a smart person, and you can tell that he is just so, so affected by his sensory issues that he can't talk.  He's so smart that he finds ways to not do it.  Like, lately he's been talking a lot (for him) at school but his volume is bad.  It seems sneaky but I think he is trying to please us or his therapists and also do it in a way that is comfortable for him.

When I think about how he might feel like there are bugs crawling on him, or that he might feel like the top of his head is going to blow off, I want to just - I mean, it kills me, I can literally feel it hurting me.  I would gladly take it away if I could, obviously. If I had to feel that way every day for the rest of my life, I would, if it would relieve him.  But that is a B.S. claim, because I can't.  What I can do, I hope, is try and figure out how to make him feel better in  a way that works for him, in the world.  It is so, so much trickier than it sounds!

Also, a complaint:  the reporter asks the father what it's like to 'meet' his daughter, once she starts typing to communicate.  This hit my ear the wrong way, because, um, they've met!  I've MET Anthony!  I KNOW Anthony!  I might not know every thought he's having or exactly what is going on in his brain, but BELIEVE ME, I don't know what's going on in Maria's or Veronica's or Felicity's brain either and I know them!

But mostly, I find this video extremely inspiring.  It makes me want to keep trying and pushing and trying and I know something will open up for us someday.  I always think of Anthony as being SO OLD because he's the oldest, but he really is just a little boy, still.  There is always time.  There better be!

Clown Bike

Ha, I thought he looked like Gulliver here but then a friend of mine on Facebook said her son rides his little brother's bike and calls it his clown bike, which seems more appropriate. That's the bike Maria got for her birthday, but we have already decided we'll get Anthony one - well, a bigger one, this spring, an early present for HIS SEVENTH birthday. SEVEN!

I don't even know what to say, it's all so repetitive and boring. He is doing well in school but not so much at home. He had a backslide on toilet training, he was even having accidents at school, so we chalked it up to after-effects from his Christmas break. Also, Mike and I have to be more tough on the weekends about following the exact right schedule and we had gotten kind of lazy about it. Mike has to do almost all of it, like 95%, because - well, because it's a habit we have fallen into, I guess, I am usually messing around with the baby, who lately wants only me.

He has been having kind of a rough time, tantrum-wise, too. It can be super disappointing, I try and not judge it but man- out of nowhere, he gets so mad/sad and there's nothing we can do. I've been doing a little work with him, his speech therapist sent home some cards for him to verbally label and I've been doing that, he seems to like it.

I read this week about this girl, Amelia. The short version is that she is being denied a life saving surgery because she is mentally retarded and the doctors that could do the surgery don't think her life is worth living. Honest to God, to think that I was once in a position where I would just read that and think, hmmm, what a shame. Now I read it and I start to cry, and my palms get all sweaty and I think my God, what would I do if it were Anthony? There are people that think that his life isn't worth as much as THEIR kids life because he has autism. Blech. It blows my tiny mind.


Anyway, here are, sometimes having tantrums, sometimes not making it (or seeming to care about) to the potty, and sometimes we are riding a clown bike in our pajamas.

First Thanksgiving

Whenever I have a little baby, I always think of when Anthony was a little baby. He didn't stop talking one day, I don't feel like we LOST him or anything, but when I think about how I couldn't get him to sit in a chair like this now, couldn't get him to smile at me or look straight at me, it makes me feel kind of depressed. It shouldn't, I mean, Maria wouldn't do what I say now either, unless she felt like it. But wasn't he so cute? In his little outfit, with his old man hair?

He's doing well, LORD he's happy to be back at school, he went back yesterday. He had TWO accidents, which stinks, but I suppose is to be expected, since it was a crazy week here. He has been doing well overall, we are just soldiering on.

This year I'd like to get him into some kind of hippotherapy, some kind of riding. I hope he can go to camp again. I'd like for him to be as toilet trained at home as he is at school. I hope he has a great year, I can't believe he'll be SEVEN. SEVEN!