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!

There are Crappy Parts, too. LOTS of them.

In the interest of fairness, I feel like I should say the Ten Things that are CRAPPY about Autism, too. I felt like a big fake and phony when people said such nice things about my last post. I meant the things that I said sincerely, but I ... I just - I mean, I don't feel that way all the time! I ASPIRE to feel that way all the time. I do lose my temper and I do say crappy things and I do lose faith. But that post was about what brings me joy from Anthony and from the fact that he has autism and that's what I wrote. But here's the crap:

1. Well, there's the crap, of course. And by that I mean poop. And by that I mean SIX LONG YEARS of changing diapers. We have made such wonderful progress with toilet training, but I could tell you some stories about what we have cleaned up in this house that would curl your toes. So I won't. But man, we have cleaned up a lot of poop in our life with Anthony and that just sucks. There's no two ways about it! Thank God for buckets of soapy water and scrub brushes, is all I'll say about that.

2. It's lonely - it's worrisome that Anthony doesn't love me, or whatever, just because he doesn't say it. It bothers me that I can't just fix his mood like I used to be able to. When he was little and screaming, I could wrap him tightly in a blanket and rock him and put on his blow dryer cd, and he'd calm down. Those days are over and I never thought I'd say them but I miss them. I miss that, anyway, that ability to make it better.

3. It can be embarassing. I'm such a crier, SO horrible a crier and as I've said, I cry at meetings and stuff, or, like, when that mom apologized for her son saying something about Anthony wearing a swim diaper. I know lots of autism moms who cry at their kid's IEP meeting, so I'm definitely not alone. I just wish I were TOUGHER about things.

4. I feel out of control, a lot of the time. I sometimes worry, when Anthony is having a tantrum, about what will I do when he gets bigger? Is he going to beat me up, like in some stories I've read? It doesn't *seem* like that will happen but I worry anyway.

5. I worry about Anthony and God. I know that God loves Anthony, even though I do sometimes get DISCOURAGED at the MYSTERY involved. But I wish that he could be getting ready for Communion, that he understood any of it. Religion is an important part of our lives. We went to Mass on Christmas Eve (we go every week, of course, not like THOUSANDS of people we saw at that Mass, ahem), and we took Maria. I guess they've been working on Away in a Manger at school and she sang it, LOUDLY, like she does everything, and it was so, so sweet. Her voice is really cute and it was just adorable. And my friend Carlos' kids, boys, were both involved in the Mass, and it made me really wistful and jealous.

6. I wish I were normal! I wish I could just know that I was going to raise up my kids and then they were going to turn whatever age, and go to college or whatever and then get the hell out of my house. It's not likely that that's going to happen with Anthony and while I would never wish for anything different in reality, in the abstract, it's just ... not what we expected. I'm so OLD, I worry all the time about what would happen to him if anything happened to us.

7. Um. Believe it or not, I'm having trouble thinking of 10! Let's see. He's noisy, there's no denying it. It can be a problem - we can't go to church and sit there the whole time because he's noisy. We can't go to places that it's unacceptable to have such a noisy person there, like the library. And if we DO go somewhere where someone could make noise, people give us funny looks, which sucks. It doesn't MATTER, in the grand scheme of things, but it isn't pleasant.

8. I am constantly reading stories about people with autism being mistreated or killed. This is incredibly upsetting, which probably goes without saying.

9. I find it so, so disheartening when I think I am going to read a book or an article or a blog post about someone with autism and I will relate to it. Then I read it and it's about the problems someone has with autism like they talk too much about a certain subject, or that they are having trouble in their mainstream school. Or they won't shut up. Or or or ANYTHING that is NOTHING like what we worry about. Then I feel bad, because I know that those problems are very real to the people who have them. It's just - I feel like no one has autism like Anthony has autism. And I hate it when people ask me if he's "high functioning". Did I ever say, I have a friend who asked me if Anthony was high or low-functioning and then she told me a friend of hers had a son who was really low functioning and then she *kind of made sounds like this kid makes*. And she *waved her hands around*. I mean, what do you do? Do I really kick her ass at a playgroup? Do I cry? These things occurred to me to do. But I just said he was non-verbal, which I think most people take to mean low functioning, but I didn't think of him like that. And I told her that he did wave his hands around. As I said, disheartening.

10. TEN! I made it! I constantly and I mean CONSTANTLY worry that I am not trying hard enough with Anthony. Because the thing is, no matter how hard I try, in some ways, it's not enough. It takes a team of us to help Anthony in all the ways that he needs to be treated. I am not a speech therapist, I am not an occupational therapist, I'm not even a teacher! So it's hard for me to know that I'm doing everything I can for him. I always thought of myself as a person who could fix anything. It used to be my b.s. answer at interviews about what was my weakness. I'd answer, honestly, that I had a hard time letting things go until they were fixed. I am the kind of person who truly enjoys doing ironing, polishing silverware. I love when things are a big mess and then I can just DO SOMETHING and they can be fixed, better. As Carrie Fisher says, I believe instant gratification takes tooooo long. So it's crappy that I have to wait so long to see such minute progress. But it is teaching me patience, I guess, and what else can I do? This is our situation. You can't pick your baby, my mom used to tell me, and she's right. If I COULD pick an Anthony, I'd pick the one I have anyways.

Joy Joy Joy Joy Down in my Heart

My internet friend wrote about the Top Ten Joys of Parenting an Autistic Child and when I saw the tweet about it, I thought, blech, I couldn't come up with ten.  I thought it figures.  She can't stop at just ten and I can't think of ONE!  Bah, humbug, poor me!, I thought.  Then I read her list and I thought, oh.  Oh, I can think of ten and probably more!  The devil is really in the details for me, because if I think about my life, our lives, in terms of minutes and hours I want to jump out the window, but if I think of it in the big picture, it's always better.

So.  Drumroll, please.

1. I feel like I have a bottomless well of love for Anthony, in a way that I don't for the other kids.  I do not love him more and he is not my favorite, I think that's a ridiculous claim to make, but I feel such patience for him.  I feel like I can do anything for him, really anything, even, like, superpower stuff.  It would be EXTREMELY handy if I had such patience for other kids (cough, MARIA, cough), but I don't.  I think my children get what they need from me, each of them, and Anthony needs a lot and gets a lot, because magically I HAVE a lot for him and I get true joy from that.  
2. I have met some great people through our short journey in Autismville.  I know why I love Anthony but it's a true gift to realize that even people who are not his mother or related to him in any way love him too.  
3. I get joy from having Anthony, period.  I am so, so proud of him and what he can accomplish.  I was talking with his therapist the other day about his work on his volume.  He has been talking but so quietly, and they've been specifically working on his volume and she said yesterday she didn't have to ask him to repeat one thing.  They've been working on it for such a short time and he's just doing it!  He is a very tenacious person, as his ped told me when he was two months old and could scream for six hours straight, and it is finally paying off.  
4. It really touches me when Anthony pays attention to his  family, especially his sisters and especially the baby.  I know that in many ways, he doesn't care that someone is here, or saying hi to him, or lying around in a swing looking super cute.  So when he is able to notice and smile, I assume it's because he has so much love in his heart for his family that it beats up his sensory issues or whatever else is holding him back and I just - I mean, how could you not find joy in the fact that love conquers all?  
5. I get joy from seeing Anthony's family love him so much, especially Maria and Veronica.  As I've said, Maria is just starting to notice that Anthony doesn't act like boys, say, at her school, but she doesn't seem to care too much and for that I am grateful.  Veronica just thinks Anthony is great and it's a great sight to see.  When they are all three in the bath together, and being good (which NEVER happens, hardly), they are joy personified.
6. I sometimes complain that although we've been parents for almost seven years, Mike and I only go to four years, as far as parenting a typical child.  I find myself surprised at how little I know, or how shocked I am when Maria does something that I consider to be very advanced.  It turns out maybe it's NOT so advanced, it's just typical for a four year old or something, but it's exciting.  Maybe it wouldn't be so exciting if I had been through it before, or maybe I'd be freaked out if she wasn't doing something that I expected her to.  Autism and Anthony have taught me to appreciate any and all advancement, whether it's on time or not.  
7. I think one way to find joy in one's life is to find out what your vocation is and do it.  I am CONSTANTLY complaining about being a stay at home mother, as you may have noticed, and I hate it in a lot of ways.  But I have absolutely no doubt that I am right where I should be as far as being Anthony's mother.  I feel like I was built for it, like I've been preparing for it my whole life.  
8. Anthony makes me want to be a healthy person and live forever.  I don't know what the future holds for any of us, but chances are good we will take care of Anthony in a different way than we will the other kids.  I want to live forever so I can take care of him forever.  
9. Watching Mike be Anthony's father brings me joy.  If I ever had any doubt about him, and I never have, they would be erased immediately upon seeing Mike with Anthony.  I read a lot about dads who have a hard time with their son's autism, to the point that they LEAVE their family.  It's so the opposite for us, it's hard to believe.  It's hard to believe what a wonderful father he is, but I can see it every single day. 
10. Um...I guess I can't think of ten.  KIDDING!  My family and my friends have been great my whole life, but especially since we got Anthony's diagnosis.  So many people sent me messages or called me or told my parents to tell me some great story about an experience they had with a person with autism.  It means so, so much to me that my people care so much about Anthony, about all of us.  We moved away from our extended family a long time ago, which stinks because we grew up around each other and were pretty close.  But it's amazing to me how kind people have been and how miles between us seem like nothing when someone has something encouraging to say.  
11. When Anthony is sad, I am sad.  I always sing to them when they are babies,
    I want to be happy,
    but I can't be happy,
    'til I make you happy, too!
    and it SUCKS because when they are babies they are always screaming in my face so I find it hard to be happy, as I said in my SONG!  When Anthony cries at night, or has a tantrum, it rips my heart to pieces, I feel it physically.  But when he's happy, I feel that too.  I feel it physically and it makes every single minute worth it, MORE than worth it.  It makes me glad to be alive in a way that I wouldn't know otherwise.  

1501

I just noticed that my last post was my 1500th.  FIFTEEN HUNDRED!  Holy crap!  That's a lot, right?!  I can't stop with the exclamation points!  Whenever that happens I think of this old Snoopy cartoon, is that what they're called?  Snoopy?  Charlie Brown?  PEANUTS!  Sheesh.  Anyways, I forget who, maybe Linus, is writing a letter to his pen pal and it goes something like this:

Dear Pen Pal,

How are you?  I am fine?  Today in school we learned about the question mark?  And when to use it?

Ha!

I don't have much to say, Anthony went to bed late and woke up EARLY.  EAAAARLY.  It was super sad because Felicity slept all night with only one wakeup for the first time ever and there we were at 4:45, Mike and me, wide awake and tense because Anthony was yelling away in his room.  He had kind of a 'rough afternoon', his therapist said, he was all red-eyed and sad.  BUT he had Jump Bunch today and they said he is learning to throw the ball harder and faster!  Yay!  Also, he had a Music Therapy progress report, and apparently he is getting better at requesting to dance.  That sort of makes my heart sing, because he has always been a good dancer.  When I talk about things like this, Jump Bunch, and Music Therapy, I think about how lucky Anthony is and how many people work every freaking day of his life to keep him moving in a forward direction.  We are all really lucky, even if we are tired and losing our looks because of a lack of sleep.  :)

1501!

Sunday

Today was a pretty good day for Anthony - he didn't have to go to church because he slept in, AND he got to go to Mike's mom's house for a visit.  Ha, he is funny, though.  Mike told me that he saw a cat in the driveway when he was still in the van and after that he was all, "okay, I'll be staying RIGHT HERE".  Mike eventually carried him in and he was fine, but Anthony is not a fan of the feline.

He has gone for FOUR WEEKS IN A ROW AT SCHOOL WITH NOOOOOO ACCIDENTS.

He's doing okay here, it's not as good, obviously, but he is doing okay.  We at least have expectations here and he knows it, or I think he knows it and we are moving forward.  He was dry all day today when Mike took him to the bathroom and that includes two long trips in the car.  So, that's good right?

I made him a ball pit for Christmas but I gave it to him already.  The problem is that he throws every damned ball out and it drives me mad.  PLUS he likes to lie down in it so why throw it all out?  I've looked online for clues and it looks like maybe others have had more success with MORE balls, so I'm getting more.  It was incredibly cheap, like $4 for the pool, $8 for 100 balls.  I just have to make it work, as my friend Tim Gunn would say.  I keep it in his room so a) it's his and b) all those damned balls are contained to a room anyway.  Sometimes I put them back and I put all the blue ones, then the yellow, then the red,  and I think who has autism here anyways?  Ha!

He's back to school tomorrow, he'll be off for a week between Christmas and New Year's but Mike will be home too.  Maybe we'll be able to do something fun.  I'd love to take him to a bounce place or something, I know how much he loves it but they are so super crowded when everyone's on break.  We could try it, I suppose. I'm scared just thinking about it, actually.

So.  Tomorrow we are off to another week, God knows what will happen but I hope it's good.  I am trying to be more optimistic during this Advent season and - well, I just started today, but I'm hopeful.  The priest in church Saturday night gives us small assignments each week of advent and this week he said be on the lookout for sin.  He said at this time of year more than ever, we should be kind and NOT sin but there we are, cutting people off and getting all crazy from the shopping.  Good point, I thought, and I am going to try to have TRUE Christmas spirit and think of the Baby Jesus as I think of my babies.  Although I always have to think, that Baby Jesus looked like He was a good baby, didn't he?  HE wouldn't throw those balls all over that manger, ha!

Thursday

It occurs to me this week that Anthony never, ever talks at home anymore. He has gone like 11 days in a row without an accident at school, and allegedly he talks away there, but man. He hates it here, I guess, because he spends a lot of time pooping in his pants, or on the floor, or the furniture, or ... anywhere but in the toilet, mostly. He used to talk at home. He used to sing at home. He used to sign things, or say what sign I was making. But now he does nothing, except run around, tear cheese off of pizza and throw it on the floor, get the ice cream out of the freezer and dig it out with his hands, enjoy the bath, take off his pajamas, pee and poop all over his room, have tantrum after tantrum after tantrum, on and on and over and over. Today I thought - it's like he's an active member of his school - a 'learner', as they call them, but he is not a part of this family. Sometimes it feels like every nightmare I have about autism is coming true and he is getting further and further away from us.

THEN sometimes, he's very sweet, he comes over and leans in for a hug. He seems to enjoy the ball pit that I made him. He plays chase with Maria. But I have to be honest and say it's so, so rare. He is mostly on his own, stimming away, taking off his clothes and voiding everywhere. He is dropping food on the floor, and dragging his food covered hands all over the furniture, me, Mike.

I have all these friends from the internet who are autism moms. I feel, as usual, that I have nothing in common, that our days are so, so different. I am ground down to a nub every day and maybe that's why it feels so hopeless here lately with Anthony but man. I am really, REALLY hoping that we have some kind of a turnaround after the new year.

Hmmm. Good news. Well, he's been accident free at school, so that's good. He has a new program manager that has worked with him before and that I really like, so that's good. I cut his bangs. But now he AND Veronica are howling away so it's hard to think of anything else that's good. Maybe tomorrow.

He Loves a Parade

Anthony, watching the parade on Thanksgiving morning. He slept in this morning and woke up pretty happy. And hungry! He's eaten two waffles, an ice cream sandwich, and a soft pretzel.

I am thankful for so many things, especially when it comes to Anthony. We are thankful he went to summer camp for the first time this year, that we started (and are continuing) toilet training. I'm thankful he has a team at school right now that really work great with Anthony. He is going to change program managers here soon, and his new program manager used to work with him as a therapist and we all love her, so that's exciting. I'm thankful that he has come so far. I'm thankful that we live in Indiana and he has to be allowed to have health insurance which covers his treatment for autism.

NY State recently passed an autism mandate and it's extremely painful to read stories about what financial people think of such mandates. There is a STRONG sentiment that it's NOT FAIR and NOT WORTH IT to treat these children, especially children like Anthony, who are more profoundly affected. First of all, guess what? Insurance itself isn't really fair - it is a giant corporation who wants to take your money, and then wants to screw you over if you ever DARE to want or need to collect. Ask people affected by Katrina, people who lost everything, if they think the way they were treated by their insurance company was FAIR. Life isn't fair. It's not fair that Anthony is so affected by autism, so I have no sympathy for some jackass who doesn't want to PAY for Anthony's therapy. We pay an ever-rising premium every month so that Anthony can have insurance and yes, Anthony's therapy costs more than what he pays into it. But I have paid my WHOLE LIFE into health insurance and I have rarely used ANY OF IT, same with Mike, same with our other kids. Thank God, Anthony is extremely healthy, he has only ever had ONE ear infection! Why is no one bitching because insurance covers tubes in kids' ears? They have to pay for that too, but I guess it's easier to pick on kids who can't talk for themselves. Jerks.

Um, but this was about gratitude, right?

I am grateful for my family, and Anthony's family, for being so loving and supportive of Anthony. I'm grateful that Anthony is ours, we couldn't love him more. Happy Thanksgiving!

Saturday

Tantrum, scream, scream, howl, maniacal laughter, removal of clothes, repeat, repeat, crash, cry, tantrum, accident, cry, yell.

Flying

He really likes to jump off stuff. I wish he weren't so crazy, I'd get him a bigger trampoline. I'm afraid he'd break his neck, though. He's jumping off the couch, here. I was nursing the baby and couldn't get up but I could record it, ha! It's blurry but he never stops moving. He's had a good week, a pretty good toilet training week. He dressed up as a rock and roller for Halloween and won best costume! We wanted to take advantage of his hair. Don't tell him but I bought him a small swimming pool and some ball-pit balls for Christmas. I'm going to give it to him for his room and I hope he'll enjoy it before he goes to sleep. He loved the one they had set up at his camp this summer. He still has some rough mornings and some behaviors but it's kind of the new normal, right? We are just plugging away, he is so sweet and cute I can't stand it. He's doing well in school, we are doing our best. Well, ha, he is, I can't speak for myself.

Autistics Speaking Day

Today is Autistics Speaking Day.  Oh, how I wish I could ask Anthony what he wants to say about it.  I guess I could ask him but chances are very, very good that he wouldn't answer me.  It has been a long road, these six and a half years of Anthony not talking to us.  I think about it so much, for not just Anthony and me, but I think about it regarding Maria, and Veronica and even Felicity, now, because not only does SHE not talk, but she doesn't even look at me.  Something no one tells you is how LITTLE CHARM babies have when they are less than six weeks old.  She is way more like an alien life form than like a human at this stage.

Anyway, I don't know what Anthony would say he wants people to know about him.  My heart tells me that he would want what any other person would want.  That he wants people to know that he is smart, and sweet, and so lovable.  That he is trying so hard, every day, to just live his life and be happy.  That just because he doesn't sound like everyone else doesn't mean that he deserves any less.  But that could be me.  :)  Anyway, happy Autistics Speaking Day to Anthony and to everyone who has autism.  I hope that we can all express ourselves in the way that we want to, and that we can all be heard.

Mike

Mike took this, he takes much better pictures than I do. Anthony is having a good week, kind of. Tonight he went right to sleep, which hardly ever happens but it happens enough that Mike and I know what it means, which is that he will probably be up at 4:00 in the morning. Mike said, and it's true, of course we want him to go right to sleep, he has been having terrible tantrums at night so we are glad when he is spared those. But at what cost? Then he wakes up tomorrow at 4:00 and is miserable by 8:00? Plus we are awake then too, so we are really tired? More tired? Ugh. I wish he could just a) go to sleep without dreadful tantrums and b) still sleep until 6:00 or so. Oh well, he's not a robot - he's a human being with some funky ass sleeping patterns. What can you do? He had a great day today, his therapists said, so maybe it will continue. We'll see. You never know, as my nephew Parker says. You never know.

Three

If you look closely, you can see there are three of them in this picture. Poor Veronica is down in the right corner. It must say something about my level of exhaustion that it took me a long time to realize what was up and down and right and left in that picture. Sheesh.

Anthony is not having a great time of it here at home lately! He has been freaking out at night, and sometimes during the afternoon, and mostly ignoring all toilet training that we've done. It's beyond disappointing. It's like, if one thing was going well, we could at least point to that, but it's not, really, nothing. Allegedly he is doing well at school but ... who cares? Ha! I mean, I care, of course, I'm glad he's doing well most of the time, I just feel like ... well, he LIVES here. I wish he could be happier and more successful here and I have all these ANGER feelings of ABANDONMENT with regard to the toilet training here and how screwed he got on the home training and .. ugh. We are going to continue to plug away and face each day and new pair of underwear with a smile and hope it gets better. And I'm going to make voo doo dolls of people to play with in the middle of the night when I am up nursing and I'll get my aggression out that way, ha!

Maria, as pictured, follows him everywhere lately. He doesn't seem to love it but he doesn't seem to hate it either. I mean, I think ideally he'd want to be left alone but she is hard to resist. She loves him so much, it breaks my heart to see it.

We are coming up on our second weekend where we're all here, I hope and pray it goes better than last weekend! Anthony was supposed to go on a field trip to a pumpkin patch this week but it was postponed, we have had some crappy and cold and rainy weather. I think it's supposed to be clear this weekend, so maybe we'll go back to the pumpkin patch. We'll see. I haven't taken the baby anywhere yet but that is all outside and she'd just be in the wrap anyway so I think she'd be okay. Speaking of the baby, she is starting to scream in earnest so I have to move around again. Later!

Anthony and the Girls

All of the kids, except Veronica, have a book with their name in it.  Anthony's is called Anthony and the Girls and it's super cute.  I guess it's prescient too because now it really is Anthony and the girls around here.  Felicity Rose Beck was born on October 10, she is gorgeous and perfect and sweet.
Anthony had a great week in school last week while I was gone, I'm not sure what that says about me, I'm going to guess and hope NOTHING, ha!  We had a rough weekend for our first weekend as a family of six, but what can you do.  Saturday was our worst toilet training day in a long time, it was HORRIBLE.  We are just going to keep trying and being consistent and hope that we can start to do as well at home as we do at school.  If I think about it too much, the disparity between his success at school and at home, it makes me want to yell and scream so I don't think about it too much.  I am just determined to make it work here at home and that is that.
He seems largely uninterested in the baby, but funnily enough, Maria has been all over him lately, they have been playing chase a lot and hanging out.  I mean, it's mostly her and not him but I'm glad they have each other anyway.
Mike and I went to church on Saturday and there was a man several rows in front of us who was stimming with one hand and flapping around this pillow with the other.  The pillow had little bells and ribbons on it, I imagine it was fun for him to see those things whipping around.  I noticed him and then didn't think of it again, but then later in the Mass, that man started to WHACK his head, oh my LORD it was loud.  I mean - it was LOUD, I bet you could have heard it outside.  It was loud like the whack in the song Head Over Heels, by Belinda Carlisle, you know what I mean?  LOUD.  And I hoped, for the millionth time, that Anthony never does that.  I always tell myself that people wouldn't do it if it was really going to hurt them but there is no way that this couldn't have hurt that man.  And I know that he is older, not Anthony, not the same thing at all, but wow, it was upsetting.  He didn't really seem like a person who had a lot of options in life and I hope and pray that it didn't hurt him and that he did get some comfort out of it.  Aaaaand because I am selfish, I hope Anthony never does it.
Anyways.  I will hopefully get some pictures taken this week and we can get back on track, blog-wise, here soon.

Siblings

Anthony LOVES Maria's bed. I don't know if it's because it's up the highest of all the kids' beds or what but he loves to go in there. This is from the other morning before school, He was in there and Veronica climbed right up and I was snapping away with my phone, since they rarely appear together. I think they look so much alike here, their profiles are almost identical, to me. In the interest of full disclosure, I think he was grabbing her hand to *get rid of it*, but maybe not. We'll go with the picture, right, and say it looks like they are holding hands? Okay.

This morning Mike took the kids to get donuts (and bagels and coffees and juice, according to Maria) and Maria seemed unnerved about going. Mike has been taking all three kids in, since Maria LOVES to 'get down', and I guess it's been a little crazy at times. One time Anthony touched some older dude's beard - it's something they were working on at school. Anthony can go up to a male therapist at school and say 'beard', and then he can touch the guy's beard. Welllll, apparently, the guy at Dunkin Donuts wasn't in on this particular part of Anthony's therapy, so I guess he was surprised when Anthony reached out and touched his beard. Sometimes he takes his shoes off, last week he jumped up on a chair to jump down, etc. I guess people's reactions are such that Maria is noticing them and thinking they are strange behaviors.

I told her this morning, look - you can go get donuts and the women behind the counter will give you a donut hole, and they'll be happy to see all of you! Don't worry about what people think if Anthony jumps around or hoots and hollers - we all love Anthony and those people at the store will too. (Note: this is probably not true, Mike said the old ladies that Anthony went and stood near last weekend were distinctly grumpy about it but I don't care. Old people have their problems too, and they are probably worried that Anthony is going to knock them over or something. I see it in church, too.) Anyways, she went and I think she feels better about it, but man. I hate that her love and admiration for Anthony is getting all funkified because of some a-holes in the store. I did take the opportunity to tell her that if SHE behaved herself and held hands with Veronica, maybe DADDY could focus on holding Anthony's hand. We'll see how it goes.

Anthony has had a pretty good week. He started with a new afternoon therapist, which is great because it makes for less tension in MY life, which is selfish but true. He has been doing pretty good with the toilet training. We are not at 100% but we're probably at 75% and that's good. I read one blog of a woman whose son is a teenager and she said the other day (they live in NJ) that they were stuck in horrible traffic and her son asked to go to the bathroom. She said it wasn't too long ago that they would have had to pack a bunch of extra clothes and expect an accident on a trip like that and I thought, well, okay, then. Clearly, this is a goal that can be accomplished and now we are part of the population that is WORKING toward a GOAL and having some SUCCESS. That is a better place for us to be than when we were NOT working toward ANYTHING.

He is doing very well with his iPad. I am not a person who is WEEPING and CRYING over Steve Jobs' death, although I am always sad when a person who is so young dies of cancer, especially pancreatic cancer. I have a friend from high school whose husband died very young of it and she has really opened my eyes to how underfunded research is on this type of cancer, one of the deadliest. Anyways, I am not crying at the Apple store, but I did make a post on Twitter about how my son can now POINT at something and expect a result and that is all because of the iPad. That is truly a miracle in our time and I think it's going to make a big difference in his life and for that I am grateful.

What else. We are going to a pumpkin patch/apple picking today. We went out to dinner this week for my mom's 70th birthday and it was really, really fun. Anthony had not one but TWO accidents while we were there which wasn't as big a deal as you'd think. We changed him after one and brought him home after the other. I don't know what happened, he had peed a lot before we left so we thought we'd be okay. We decided we are going to use pull ups for situations like this in the future, why not try to have success where we can? He is so insensitive to stuff like this, I don't think he'll 'feel' the pull up like a typical kid could, and it means we can have an hour where he doesn't have to get all wet, why not? We're going to use one today at the orchard, too, it would be too crazy otherwise.

He is still getting kind of crazy before he goes to sleep. But, you know, the girls are too, maybe it's the time of year or the waxing and waning of the moon, who the hell knows. I am trying not to grade every day. Today is the last Saturday of Anthony's life before he has THREE little siblings, so we're going to try and have fun. Wish me luck on Monday and think of me and our next little baby!

Yikes

BOY he is having a rough time of it at night here lately!  He had one 'big bump in the road' today this morning and one 'bump in the road' this afternoon at school, that's what his therapists call it.  Now he is flipping the flip OUT in his room and it is giving me agita, which I already have pretty bad anyway.  I went in there and he was fine, just tense and sad and probably tired.  I don't know if I should go back in, if he is thirsty, hungry, what the hell.  This is a very challenging part of Anthony, these behaviors.  He is banging the HELL out of his door and he is sure to wake the girls.

He kept messing with and breaking every night light so my parents gave me one that I could put in his closet.  But then he wouldn't stay out of his closet and he kept SHUTTING himself in there and banging on that door.  So we turned off the light, and now maybe he's mad?  He is really kicking that door so I better stop and go see him.

How I wish I had the answer for any of it.  ANY of it.

outside/pantsless/hanger

These are a few of his favorite things, ha!

We have been having a pretty good time of it lately, overall. He still has more behaviors than I'd like, and last night he was what I can only call COMPLETELY KOOKOOPANTS until after freaking MIDNIGHT or something, but overall, he is doing okay. I am trying to adopt a brand-new reaction to his behaviors, I am trying to say less words to him and when I do say words, I am trying to make them soooothing and caaaaaalm. I am trying to let him know that I understand his behavior isn't what he is saying, it's just how he is saying it. It's so hard and crazy - to act one way with one kid and a completely DIFFERENT way with the other kids, I can't do it, really. But if I speak in a nicer tone to Maria or Veronica, that's not a bad thing, right? Trying to understand Anthony helps me understand the other ones better and in fact, it helps me understand PEOPLE better. There is a lesson in all of it, I suppose.