Cutest Baby EVER

Rare Sighting

2012-01-29T22:56:00.000-05:00

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

2012-01-18T22:29:00.000-05:00

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 har 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

2012-01-16T09:48:00.000-05:00

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

2012-01-14T12:46:00.000-05:00

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

2012-01-04T09:12:00.001-05:00

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.

2011-12-28T19:58:00.001-05:00

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

2011-12-22T11:03:00.000-05:00

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.

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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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

2011-12-06T22:11:00.000-05:00

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

2011-12-04T21:46:00.001-05:00

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

2011-12-01T19:21:00.000-05:00

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

2011-11-24T10:44:00.000-05:00

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

2011-11-12T23:09:00.000-05:00

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

Flying

2011-11-04T18:42:00.000-04:00

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

2011-11-01T09:58:00.000-04:00

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

2011-10-26T21:36:00.000-04:00

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

2011-10-21T11:16:00.000-04:00

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

2011-10-17T12:35:00.000-04:00

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

2011-10-08T09:02:00.001-04:00

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

2011-10-03T20:53:00.000-04:00

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

2011-10-02T17:28:00.000-04:00

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.

TV

2011-09-24T11:05:00.000-04:00

We have been watching new tv shows, LORD it was a long summer without new stuff to watch! One of the reasons I've been happy about having an October baby is that at least I'll have some new entertainment to watch in the night when I am up with the baby.

I don't like Glee anymore but someone else who lives here does, so we watch it. There was a new character on the first show, talking about how she had Asperger's and that's why she said inappropriate things. She would say something rude or mean and then classify it, "Asperger's!" or "NOT Asperger's!". It was annoying because I think people who really have Asperger's and autism don't always get to choose or not choose what they say or what they know is appropriate to say.

Then I was watching Two Broke Girls, it's about two waitresses in Brooklyn. The new waitress, a rich girl whose Dad is a Bernie Madoff-type, lost all her money so she has to waitress. Because THAT ALWAYS HAPPENS. The girl who is already a waitress has been a loser her whole life. SO as a waitress, I'm already sort of annoyed at the premise, but whatever, it's CBS and everyone knows, CBS sucks. Anyways. The new girl is marrying ketchups, so she lines up the bottles. This is 'funny' because she doesn't know what marrying ketchups is - for those of you non-waitresses out there, it's when you put all the ketchup from one bottle into another and fill them all up. It's kind of gross, really, I try not to think about it too much.

ANYWAY. The mean waitress calls the other waitress' doing that her "Temple Grandin routine". Ha ha ha ho ho isn't that funny? She's lining things up like she's AUTISTIC? Get it? Cause they line things up? Ho ho hilarious, CBS.

I commented on FB that I had seen two jokes about autism and a friend of mine said that her dad was disabled and if she had a penny for every disabled joke, etc. I know that her Dad has MS. I think her Dad has MS, I can't remember but I think so. Anyways, I don't think that's the same thing. I mean, of COURSE I don't think we should make fun of ANYONE's problems, but me noticing for Anthony is not the same as her noticing for her Dad. I told her that I feel because Anthony literally and figuratively doesn't have a voice, I feel l have to take up for him in matters like this. Also, I said, the shows are on past his bedtime, ha ha, trying to make light of it because actually I'm kind of offended. I don't really like having the PAIN OLYMPICS and seeing who can win. I was just trying to drop some knowledge! She said her Dad doesn't have a voice anymore either so she knows how I feel. Sigh. Point missed.

THEN I was watching Kathy Griffin's new special - let me say at this point that I watch a lot of tv. I also try to read a lot but I have to wear glasses now and I have lie down on my side and I can't lie down on my side and not squoosh my glasses so I've given up on reading until I have this baby. Anyways, one of the first things Kathy Griffin said was that Kris Humphries, Kim Kardashian's new husband, looks a little 'special needs'. A little 'special needy', she went on to say. THEN to clarify that she could say that, she said that she had a dog named Larry who she felt pretty sure was autistic. She said, pretending to weep, that she was very much in tune with the autistic dog community, or something. So. Um. That's offensive, right? It's here, it starts at 4:12.

Tracy Jordan, who is on 30 Rock, which I haven't seen yet but only because it's not on until January, got in trouble not long ago for making fun of gay AND retarded people. Well, not retarded people but their moms. I don't even know. Well, not trouble. It's not like you get arrested or anything, but there was a hubbub.

Here's the thing - none of this is that funny OR that big a deal. I don't look to CBS or Glee or Kathy Griffin for comfort or guidance. But I am scared that somehow it's not okay to say 'retarded' anymore, but it is okay to say 'autistic' or 'Asperger's' or 'Temple Grandin-like'. Which, I mean, Temple Grandin is a freaking GENIUS - people would be LUCKY to be like Temple Grandin! But they don't mean that when they make fun of her, they mean how because she has autism, she lines things up. And NOBODY WANTS TO DO THAT, EVEN IF YOU ARE A GENIUS, TOO.

Anyways. So it scares me that by using these words in making fun of people - by saying they're special needs or autistic or whatever, it will make it seem like they are LESS than PEOPLE. I listen to Anthony hooting and hollering away sometimes and I wonder what people will think of him. Will they know that he is doing it so he can stim vocally and get some feedback that he needs? No. Why would they? They will probably think, well. I can't say what they will think because I'm getting sort of wound up already and I have a cold and don't need to be any stuffier. But if they hear people making fun of those with special needs, those who have autism, and they think those people are somehow LESS deserving of kindness and understanding and people MINDING THEIR OWN BUSINESS, then they are wrong.

So I guess I'm going to keep saying it when I hear it. What else can you do? I know what I'd like to do. I'd like to just start smacking people right in the mouth when they use words as slurs. Just walking up and smacking them. But I can't - my arms are too short to reach Hollywood, plus you can't just go around physically attacking people. It's against the law or something. Damn it.

Bath

2011-09-20T20:01:00.000-04:00

My camera card broke and Mike got me a new one so now we have some pictures again! Mike took these, last night, the lighting is funky and the kids never stop moving but I love these. I can't believe it's only Tuesday but I want to post about the week already. I guess I didn't post last week. We were planning on doing some more at home toilet training with his therapists from school, but it was kind of a bust. Anthony's morning therapist came on Monday and Wednesday but the therapist that was supposed to come on Tuesday got sick and - ugh it was just a mess. There was definitely not the level of dedication coming from his school that we were looking for, and while that is disappointing, it's not surprising and it does serve a purpose, eventually, which is that Mike and I will realize, someday, that we are mostly on our own with this and we will just do what we need to do, even if certain nimrods are going to make that difficult on us. We have it pretty good, I have to remind myself all the time, it could be worse. So what if we're tired or scared or feel unsupported, who cares? We need to be sure that ANTHONY never feels that way, that's all that matters. And I don't think he does. So it's fine. We actually had some great success with the pooping on the potty at home and he even pooped on the potty at my PARENTS' house so I'm taking it as a win! He is still having some tantrums, but he is healthier and I am hopeful that they will dissipate again here soon.

What else. He had a great day at school today, mostly. He was tested on several targets, and, um, broke through them? Or something? He did well. Mike went to a meeting there this week to talk about his teeth grinding and we are going to continue to work on that. He is doing very well with the iPad, that thing - it's like it was made for kids with autism, so weird. It's probably because so many computer programmers are on the spectrum. When I look back at all the people I worked with when I worked in IT, and how *on the spectrum* those dudes were, it blows my mind. Anyways.
It's crazy to me that it's more than six years ago that I had Anthony and now we are going to have our fourth baby. I keep telling him, we're bringing another baby home, just like Maria and Veronica! He just cuts his eyes at me. I am going to get him signed up for more swimming this week, I am hopeful he can get back into it and it will make him happy. Winter is coming and typically that's hard for him but I hope we can replace it with enough fun stuff that he'll be okay. In the meantime, we're a lot further along right now than we were two months ago, so I'm hopeful that we're on our way. On our way somewhere. :)

Slow Learner

2011-09-17T19:49:00.001-04:00

When will I ever learn to never say or think anything positive with regard to Anthony? WHEN, LORD, WHEN?

Babbling away this week with his morning therapist about how LONG it's been since he's had any tantrums, and OH IT WAS SO HARD, back when he had tantrums, and WASN'T that awful but now he's doing SO WELL. I mean, what am I thinking?

On Wednesday, Pam was here and I was saying to her, oh, he's so tired, he's so PALE! He is so TIRED! Then on Thursday, he did POOP in the TOILET but he was so tired, he was literally lying down every chance he had. I'm so dumb! I was all, WOW, he is TIRED! HE'S SO TIRED, what could it be?

Of course on Friday they called from his school and said that he had a fever of 101.8 and had been sleeping. So I went and got him and he was just pathetic, red cheeks, fever, lying down. He slept most of the afternoon, I rubbed lotion on his feet and legs, which he seemed to like. He was so sad and fevery and ... sad. Of course he went to bed early and of COURSE he was up this morning at 4:30 and WAS HE MAD. He was better but I guess not great and - oh, he just cried ALL DAY. He is still crying now and it's almost 8:00! I took the girls to a birthday party, which was just great - it's hard on them to hear it all day, too.

I was telling someone today, when Anthony is like this all day, it's so contentious, it feels so ... BAD in here, I feel like I'm in an argument with someone. I'll catch myself thinking, that damned MIKE, how dare he do ... hey... I'm not mad at Mike! I'm not MAD at anyone! So WHY do I feel like this? It's because it is very hard to feel so bad and listen to so much crying and yelling and screaming and just know that there is no reason for it. I feel so bad, bad for him and bad for us and the girls and especially for this baby. Because on days like this I think, oh no. There is no way I can do this. There is no way I can take care of all this and a baby too.

So I just hope he gets better and I hope that this behavior is a result of his fever and not my DARING to talk about our lives as if they are getting better. Fingers crossed !

Sooooo

2011-09-12T19:45:00.000-04:00

Warning: we are going to talk about poop again.

I've been trying to figure out what to do with regard to Anthony and him having more success at home with toilet training, specifically with pooping on the toilet here, which he has never done. We have extended his day at school so that he's here with the girls and just me for a shorter period of time, but it hasn't made a difference. This week, we started at home training, where one of his therapists brings him home and - well, it's just more one-on-one training, like we did at the beginning. I had this theory that since he was having so much success at school, maybe we should try to mimic what he was doing at school. I was also getting nervous that the longer he went NOT succeeding at home but succeeding at school, the harder it would get to succeed at school.

Anyways, we started the home therapy training today and he pooped on the potty. So now he's all trained. The end.

Ha! Kidding! But it's soooo nice to have so much success on the first day. I'm so hopeful that we can do it all week and really get going with it. His therapist Pam brought him home and he did great, and it was nice to talk to her about him. She is his morning therapist so I rarely get to see her.

Pam said, and I agree, things are just going really well with him. We are seeing so few behaviors from him, he is talking a lot, he is sleeping really well (I didn't say that, you know how I feel about the jinx). Now, maybe I'll have this baby and he'll regress and everything will stink, but I hope not. Anthony had a really hard time for almost a year and a half, which is like ONE-FIFTH of his LIFE, so if things can go pretty well for him for a while, well, we'll take it.

Oh, Anthony. We love him so much. We're so proud of him!

Recover from Autism

2011-09-05T20:02:00.001-04:00

My mom and I have been talking about this a lot lately. While I have some DAYS where I would like to recover from autism, I truly never want Anthony to be recovered from his autism. To me, it seems like this 'magic pill' question that everyone wants to ask about - like if there were a magic pill that would make Anthony's autism go away, would I do it? I always think, what time of day are you asking and how much sleep did I get the night before? Ha! Not really. It's not my question to ask, I don't have autism. I don't have a magic pill. I am supposed to take care of Anthony, I'm his mother. I'm not supposed to wish him away, or any part of him. I wish he'd talk more. I wish his life were easier. I wish he'd sleep better. I wish he'd poop on our potty at home, instead of in THE DRYER like he did today! Oops. Have I said too much?

Anyways. I don't think I can recover him from his autism. I don't think I can FIND him in his autism. I haven't lost him. He is right there, I can hear him, usually! We are trying, in every way we can, to make sure that he is taken care of - that we are giving him every opportunity to have the best life he can have. For Anthony, I think what seems to be working best is a combination of ABA therapy, occupational therapy, speech therapy, his iPad, paying close attention to his sensory system, and remembering that he is a person in there. I have to constantly remind myself that I don't really know what his receptive language is like. I don't want him to understand me and have me think he doesn't understand me, and have me say something like "we have to recover Anthony from the autism that is gripping his soul in the ocean of despair that has him in its' waves" or something and have him think, "the hell? I am right here! I am not gone!". It's possible I am overthinking it. Anyway, ever since I read this book., I have tried to be more mindful of what Anthony might know and hear and understand.

There are a LOT of books out there on autism. A lot. Here's what you can come up with if you type 'recover' and 'autism' into Amazon's search engine. Here's a book about using stem cells to recover your child from autism - this family tried EVERYTHING, it says. Chelation, vitamins, food, therapies, but stem cell replacement worked. Here's my question, and I admit I haven't read the book. If stem cell therapy worked to cure autism, how come we're not all doing it? What is wrong with Anthony's stem cells? How come his two medical doctors have never tested it? It's a secret? A secret about stem cells? I don't know. I mean, I don't know! I do know that I don't feel like I'm in THE DARKNESS, though. I don't think Anthony seems to be.

Here's one about nutrition for Autism, ADD, Allergies and Asthma. Anthony only has Autism, out of those, I think. Whenever I read a book about medical cures for Anthony, I am always stopped short by the fact that he doesn't have allergies - he doesn't seem to. He has never had constipation, he doesn't have dark circles under his eyes, etc. I just don't know about this. We have had Anthony tested for iron deficiency and lead, and he always comes out on top. I could never do chelation on him, it just - it seems super senseless, for us.

This book I actually read. It's about a child's journey OUT of autism and it has a picture of a kid near the ocean, which is maybe how I got the idea about being TRAPPED in the ocean. It's an okay book but here's the thing - the kid starts ABA therapy at the same time as he starts a GFCF diet and it seems to me that a LOT of credit is given to the diet and not as much to the therapy. For me, this was a bummer, because Anthony didn't have the stomach troubles that the kid in the book has. He was a fussy baby, but he had, like terrible, epic constipation, followed immediately by terrible epic d-ha, oh, just horrible stomach troubles that Anthony never had.

Okay, this book is pissing me off. Well, maybe not the book but the first line of the review is this:

Editorial Reviews

From Publishers Weekly

What can be more devastating for parents than to learn that their child is autistic?

Gee, I don't know, LOTS OF THINGS? God, maybe that you never have the child at all? That your child is sick and might die? I mean, I find this super offensive, wouldn't anyone? I am never devastated by anything Anthony wise except his good looks and charm. Ugh.

This book talks about the MMR vaccine and diet and ear infections and reflux and just - the only thing Anthony has in common with kids who have all this is that he has autism and he had the MMR vaccine. But here's the thing - lots of kids, MOST kids have had the MMR vaccine and DON'T have autism. Anthony's only had one ear infection in his life and he was FOUR! Maria had reflux and she doesn't have autism. Bang bang bang this brick wall I am hitting my head into is starting to HURT so I am not thinking of this book anymore.

I don't know about a book like this. I don't know if Anthony is MORE spiritual than Maria or Veronica or me or Mike just because he has autism. He was awfully good at his baptism, I remember thinking maybe he'd be a Priest or something! But this super gift is not really translating into good behavior in church, so, maybe not. This reminds me, though - two weeks ago we were at church and Mike was standing in the foyer with Anthony and some woman started talking to Mike about Anthony. She was a special needs teacher or therapist or something and she knew Anthony's preschool teacher, small world, right? She told Mike that she felt a special connection to Anthony or a special feeling from him or something and it made me cry, a little, when Mike told me that, because I thought that it was really beautiful. But I didn't think that Anthony was RADIATING some kind of spirit or something. I thought it must be that this woman is really called to work with kids on the autism spectrum and I thought that was great. I don't think Anthony is a magical anything because he has autism but I like the idea of it.

Ugh, I can't even, blech, here is Jenny McCarthy's book, Mother Warriors. I think it's funny that the first two reviews are probably both a little true, about it. I'm sure this book meant a lot to a lot of people but it does not, to me. I do think she is a ninny, and I don't know that her son had autism, either.

I find this happens a lot, to me. I will start a book and think, excellent! This really feels like my struggle, I am really enjoying reading it and then the author will say something that indicates, to me, that we are not dealing with the same autism. I can't worry about Big Pharma or Anecdotal evidences because we don't have time for it. I have to focus on things like toilet training my six year old, or trying to get him to stop grinding his teeth into nubs, or what I will do when he is really tall and strong and having such crazy tantrums. I am not worried that he is obsessed with Star Wars or whatever, because I WISH he was obsessed with something. I wish he would be INTERESTED in something. I hope he knows how much we all love him. I hope he knows that if I was ever impatient with him that I am sorry. I hope he knows that I will do anything for him, that I will take care of him forever. I don't care that he thinks that I am a Mother Warrior. I want him to know that I am his Mother, that "warrior" part would just be for me.

Anyways. These are my book reviews. I was telling my mom, I get a lot more out of reading blogs of women who are living with autism, who are moms to kids of all kinds with all kinds of autism. I see kids that are more profoundly affected and kids who are less profoundly affected. I don't like when people tell me what to do with any of my kids. Like, I am pro-breast feeding (ha ha right NOW I am, don't ask me in six weeks!), but I honestly don't care what anyone else does. I like to carry my kids around in slings but I am not a BABYWEARER. Ugh, maybe you don't like the idea of all that contact? FINE BY ME. I hate how bossy the internet can be, just because something worked for you does NOT mean it's going to work for anyone else. It doesn't make you a bad mother to not do it just like some good mother did. I feel like when you add autism to the internet and mothering, it can make for some crazy ass advice and I have to be discerning about what I read. Mostly I just try to read what will help me spiritually and what will help Anthony and me practically. Anyways.

Anthony is having a good week but we hate holidays and long weekends! He did poop in the dryer today but he was wearing clothes, thank God. We are getting back to a regular schedule tomorrow and I have high hopes for the future. :)

Toe Walking

2011-08-29T13:11:00.000-04:00

Ugh, Anthony's OT emailed me today to say how tight his calves are from toe walking and how we should get him back into sneakers and if that doesn't work we'll have to add orthotics and if THAT doesn't work, we'll have to think about braces. I wish this child could catch a break - today is four weeks since we started toilet training and we're moving right into braces.

I have really enjoyed this summer while Anthony has been wearing Crocs. We were having such a hard time with him keeping his shoes on, he would always take them off on the way to school and then usually stuff his socks in his mouth. Once we got him the Crocs, of course he still took them off but he could be responsible for putting them back on, which seemed like a good thing. He also looked like such a normal little kid to me in those Crocs. I KNOW I shouldn't wish that he was normal and I don't - I wish he was just like he is, he is perfect to me. It just slaps me in the face every time someone takes something away from us, even if it's for his own good.

This Week

2011-08-24T20:12:00.000-04:00

Anthony was sick on Monday but it was short-lived. I knew it would be because both girls had it too, but just for like 12 hours, so strange.

This toilet training is going to kill me. It's just like with Maria but more. Such high highs! Such low lows! Poop is gross! Same. But Maria never PEED on me. I'm just saying.

When I am really low about it, I cry and cry and think I can't do it, I just can't, I can't make it work, there's no way. But then I gather myself together and remind myself of how well he's doing. How he's been accident-free several days at school, MOST days even. How he's pooped in the potty at school several times. How, if you catch him peeing and say STOP!, he'll stop. How new this all is to him. I remind myself of all that, and I do some laundry, and then I feel better. We are working on a strategy at school to make sure that he is successful here at home, too, DESPITE a certain SISTER (pictured) trying to SCREW EVERYTHING up. Ha, I'm kidding, but she's a pain.

So. He's doing fine, sleeping (redacted), behaviors are at a minimum, he seems happy and today - today! - he was chosen as LINE LEADER at school because he was sitting so well and being so good. Anthony! Line Leader! I don't really know what it means but it sounds good, right? RESPONSIBLE?

Where Did My Baby Go?

2011-08-15T20:09:00.001-04:00

Ha! Just kidding. Stimey posted that I specifically DIDN'T say that when I posted about Anthony losing his tooth and it's true, I do not feel that way. I feel much more that it's disgusting than I am wondering where my baby went. My baby is still there, he's still in there. Sometimes, I am so lucky, because I get to rock him like a baby. I get to pick him up and carry him. I get to comfort him when he is crying and he doesn't know why. I am very lucky. Which I try and remember on days like today, when Anthony wakes up at 4:30 and hoots and hollers so much that he is difficult to be with. He was hooting away in the van today after I picked him up at school and Maria said "Anthony. Veevsy and me are trying to watch a MOVIE and we CAN'T HEAR!". Ha. He cares not, I told her, but I did tell him to shoosh.

He did lose his tooth! I would take a picture but he is all wound up and I tried to take like TWENTY before and he wouldn't stop moving his head so everything was blurry. I'll get it some time. His therapist brought out his tooth in a bag! Pam (his morning therapist) wrote a note that she just reached in and pulled it out, yikes! She said he was very brave and indeed, it does not seem to be bothering him. He also pooped on the potty at school again today. He has yet to thrill us with this trick, but I know it's coming. I'm so happy and proud of him with the toilet training I can't stand it. I can't stop talking about it. It might be the biggest thing we've ever done for him. Not that we're done but still. The starting was it for us, it's such a thrill.

I do get scared that he is getting so big, but I guess I am more scared that he is going to get bigger than me and kick my ass some day. I hope that we can get it together, tantrum wise, before he gets big and could hurt himself or others. It does make me sad when I see that other kids from his playgroup are starting Kindergarten this year, some are in First Grade. But - we're just not - we're not the same as other kids, and that's fine, really. I worry about the future, but not actively. I have to take this all one day at a time or I'll go crazy and who needs that. Plus, I have to say, I think people are FULL OF IT when they go on and on about how much they'll MISS THEIR KIDS and SUNRISE, SUNSET, blah blah blah. They are supposed to get bigger, they are supposed to grow up, they are human beings. Period, the end, as I tell Maria 100 times a day.

Ugh, I read about this study today. I have mixed reactions about it. I don't know why Anthony has autism and no one else does, no one in my family or Mike's. My second cousin's son is on the spectrum, but that seems kind of far removed, right? Maria is obviously not on the spectrum and although I think Veevsy Voo has some sensory issues, she clearly doesn't have autism, so ... I don't know! I don't know if this baby will have autism, but I don't know anything else about him or her either, so I guess I am just willing to find out. I read this article today, about the study and it unnerved me. First of all, I am nervous about anecdotal evidence with regard to autism. The author (who is a blogger that I really enjoy) says that she knows lots of families with more than one child with autism, but I know mostly families with only one child with autism. I have three kids and only one has autism. So ... that proves nothing. I am much more comfortable with scientific studies, but I am UNcomfortable with science to the degree that it affects me, or affects how many children I have. If I listened to Science, I suppose, I would have only Anthony, since I was over 35 when I had him and I'm not supposed to have any more kids, right? Because I'm elderly? And more bad things could happen? The American College of OB/GYNs says that it's much more dangerous for a woman my age to have kids, but nothing has happened so far. I don't really care what they say anyway, because they are the same geniuses that put Autism and Mental Retardation on the same level on their stupid form that you have to fill out just to get treated by an OB/GYN. They are testing for every freaking thing that your kid could possibly have before 14 weeks now, so that you can have the INFORMATION that you NEED to decide whether or not you keep the child. How stupid, how UNscientific, in my opinion, that is. How can you have all that information when you haven't even held that baby? When that baby hasn't even been born yet? So anyways, before I really get going, I don't necessarily believe or not believe that study. I feel old and tired, so I hope that this baby doesn't have autism because it takes a lot of energy to just work with the one child with autism that we have, but it will not be the end of the world if this new baby ends up having autism. No matter what the deal is with the new baby, we will feel like it's the BEGINNING of everything, because it will be.

Ugh. Blather. Anyways, 1 lost tooth, 2 times pooping on the potty, AND he is going to a Climb Time place this week. Does it get any better?

Tooth

2011-08-14T20:57:00.002-04:00

Anthony is losing his first tooth! It is disgusting. I'll write more later but I just want to record it.

Beautiful Boy

2011-08-13T08:34:00.000-04:00

This picture is a few weeks old, Mike took it one day while they were out in the driveway. My phone is broken and I have to take it in to get fixed, so I moved all the pictures off of it, including this one. I love his hair so much, I was thinking about cutting it the other day and I just can't do it. I don't know what we'll do - we can't keep growing it and growing it but I don't know if I want to buzz cut it, either. Those are our only options right now, so I guess I wil just put it out of my mind and we'll figure out something else later. Maybe something will come to me in a dream. I just cut off all my hair, so maybe that's enough.

He had a good week, toilet training wise, but a bad week, tantrum wise. I suppose it is always going to be something. He didn't have to do any "work" at school the week that he was toilet training full-time, and he had exactly NO behaviors. So ... the message is, he doesn't want to do any work? That would be a bummer because he has to. I'm hoping it's just a settling-in thing, that maybe THIS coming week, he'll do well with toilet training AND not have a million tatrums.

He went to the Fair this week. Also, a miniature horse came (not on its own, ha) to his school, but I guess he had no interest. His speech therapist mentioned he said NO! really well several times while the horse was there. When he went riding this summer at camp, they said he was scared at first but then he enjoyed being up on the horse. I guess this was just a horse to pet, though, which to Anthony might not be any different than a giant dog, and um, I can see why he didn't like it.

He also went on the Fair train, so that's his first train ride. I wish we had a picture of all these things! I am not a person who is ever all, "oh poor me, what can I do, my child is going to school!", but I can see how it's frustrating and hard to not have them with you all the time, after so much time when you can just take their picture whenever you want, and do whatever you want. I remember when Anthony was going to school a few years ago and I was so surprised at how well he did, following directions. Mike said well, they're putting on the yoke, you know, this is life, you do what everyone tells you, etc. It's so depressing! Maybe that's what people mean when they get all sad about their kids going to Kindergarten? I seriously can't see another reason - what is the alternative? They just stay at home forever? I don't get it.

Anyways, back to Anthony. Here on Saturday morning, he is sleeping, still, at 8:33! This is almost 12 hours after he went to sleep but Mike and I both thought we heard him around 5:30 so maybe he was up for a while this morning. I hope and pray we have a good weekend, I feel like he is due a good weekend, or even just one day.

Day ... 9? 10?

2011-08-10T09:06:00.000-04:00

Whatever. We've been doing toilet training since last Monday. It's going well. I guess? I want to talk about a very big accomplishment that Anthony had this week but I am unsure about the etiquette involved here. I am not, believe it or not, a person who really likes to talk about poop. I'm not a fan of scatalogical humor, I'm against it ALL. BUT this is what's going on in our lives and it's not a joke, and it IS a big accomplishment, so I'm just going to say that Anthony pooped in the potty at school on ... see now I can't even remember. I guess it was Monday afternoon. I can't imagine the insanity that went on in that bathroom - I know that it had to be crazy and I hope he appreciated it. I hope it was a big deal to him, too, because really, it's his victory.

He is doing well. He is the most patient, wonderful boy. I hope that this all works out for him because I can't imagine anyone being more compliant or working harder at something. I think of training Maria, for example, and what would it would be like to have that jungle cat on the toilet for as long as we've had Anthony there, and - ugh, it's not pretty. But he's been great. His therapists that came home were great, too, we've had a really positive experience overall. Even though I know that it's not about OUR experience, we are the ones who are aware of it, so I guess it bears mentioning.

We're not finished yet - he just moved today to 30 minutes off the toilet and 5 minutes on and that's a LOT of toilet time, but we are definitely moving in the right direction and that's all I can ask for, really. He has had a few behaviors this week already and he had one horrible, horrible night where he fell asleep before 7:00 and only slept until 11:00 p.m. and then was up until SIX a.m. and had to go to school on Monday. Yesterday, speaking for my own self, sucked too, sleep-wise, because Veronica was up at 4:20 and I couldn't go back to sleep. I am PREGNANT, I keep wanting to tell them, and have it matter. I need to get some REST, but no one cares. Well, Mike cares, he came home for lunch yesterday so I could take a nap but I still felt sick and horrible all day from it. And then I have to DRIVE a big VAN with all my KIDS in it. Oy. Anyways, back to Anthony. He is doing well, today they have a horse coming to the school to do some riding. I hope someone gets a picture. Later this week they are going to the State Fair, so I hope he enjoys that too. He is some amazing person.

Sunday!!

2011-08-07T23:21:00.000-04:00

Sunday! **shakes fist at sky**

We had a rough day today. Anthony was up at 4:00 and fell asleep before 7:00 and woke up again before 11:00. Toilet training was rough this weekend, especially today. He had a lot of accidents and ... we just don't know what he understands and what he doesn't but he seemed to be getting VERY sick of that bathroom. We probably were, too. I don't know, I hope things can get better this week. I always do, I guess.

I'm so mad tonight, Veronica was up late and then Anthony was up and it feels like there isn't one hour of the day when some child isn't yelling or being awake when they shouldn't. I would like to get some sleep sometime but I just don't see it in the cards for the next ... several years? Oy.

Then I read this thing from this blogger about how You Should Make Your Kids Help Around The House and You are a Big Jerk if You Don't and think, shut up, blogger. I can't get any of my kids to help me. Maybe I never will, how about that? I'd like to just walk around slapping people through the computer, some days.

Anyways. I don't know what tomorrow holds as far as training goes. I'm so proud of him, he's so impressive, to me. I don't know what he knows about what we are doing. I try to explain it but if he doesn't understand he probably thinks I am a) crazy and b) mean. I hate it, I hope he understands what we're doing. Maybe some day we'll find out!

Long Week

2011-08-04T12:49:00.000-04:00

Anthony is doing very, VERY well with his toilet training. It's ... well, it's just the kind of pain and fear that I had with Maria and toilet training. You are super excited for victories, and then two seconds later, you think, they are never going to be able to do this and I never should have started because now we have to KEEP doing it, etc., etc. It all seems the same. It's been nice to have his therapists here, it's more challenging than you would think to keep a kid in the bathroom! He is tired at the end of the day, but he has been a real trouper through all of this. He continues to impress us, ha!

Big Day

2011-07-31T19:50:00.000-04:00

I do still take pictures of them, I swear. But I always have to hide the camera or these darlings will THROW it to the ground so it's not just at the ready. I want to update though because Anthony had a good week AND tomorrow is the big day when we are starting toilet training. I am ... I am beyond nervous, but I'm trying not to be. I told my sister today, it's not like *Anthony* is nervous and if he's not going to lose sleep over it tonight, why should I? I have purchased all the stuff we needed (underwear (!), treats, etc.), and I am sending in extra clothes. I am saying prayers and asking for prayers and that's it. That's all I can do.

I'm grateful that we're starting the process. I'm grateful that he's done well, and better than was expected, with the pre-requisites. I'm grateful that so many people have given me information and sent books, etc. I know that people are thinking of us. I'm grateful that it's summer time, because there are less clothes to get dirty, ha!

We went to church today and it was my turn to go out with Anthony. He did okay in church but as usual is TOO LOUD so we left after a while. Everything was FINE, of course, until other people got involved. I bet 20 people came in after we went out of the church, which is a lot, because Mass was 10 minutes underway when Anthony and I came outside. Then some guy came out with his kid and the kid was merciless in following Anthony around. The Dad, of course, did nothing and I felt like I had to watch pretty closely. Anthony is not a person who would hit anyone unbidden, so far, but who knows? He had his hanger with him and I don't know what he'd do if the kid tried to take it. And NEITHER DID THE DAD. So finally, it was making Anthony pretty tense and I took him outside. Where it was extremely hot, but whatever. I swear I haven't spent a comfortable summer since I've had kids anyway, who cares? It reminded me of when Anthony was a baby and loved to be rocked outside. I'd step ONE TOE in the air conditioned house and he'd start screaming again.

It wasn't that bad. He was happier outside and he listened to me and stayed by me. Then after a while, we went back in and the foyer was empty. After a while, an older lady came out and she must have not felt well so she lay down on this pew that's in the back. This happens a lot - people get sick in church - it's early, maybe they haven't eaten, God knows it's hot enough to feel sick, so it was not a huge deal. In fact, I was jealous that she was lying down, ha! Then that KID came BACK!, but the father held him this time. We went to Communion when it was time and then we sat in church for the rest of Mass, soooo, not bad! And as Mike pointed out, nothing we would have thought we could have done two months ago.

He's had a good weekend, he was super tired on Friday. He was so sad and teary when I picked him up, it was heartbreaking. No one at school seemed to know why, but I've seen it before - I think he just ... it just adds up, maybe several times he's wanted to communicate something and couldn't and it's hard, and sad. Maria was so sweet with him, she held his drink and she said "ohhhhh, buddy, it's okay! Don't cry, it's okay!". He got better right away and then we had ice cream, so it was completely forgotten by the time we got home. I hope.

So wish us luck this week - I am going to try to be hopeful for the best and prepared for the worst. Even if we try and it doesn't work, I'm okay with that. What else can we do with all of them but keep trying?

In other news, today is my seventh wedding anniversary. I had such a great wedding, it was so much fun and I remember that right when we walked out of the church, I thought, we did it! We got married! I wasn't worried about anything and in fact, things that seemed like such a big deal to me THAT MORNING weren't anymore. I remember thinking how STRESSFUL it all was, planning a wedding. Good God. I'd like to go back in time and smack that dumb girl in the face. In a loving way, of course. :) But I am very lucky to be married to Mike, there is no one on Earth who I could do this with except him. I am luckier than he is, for sure.

Tuesday

2011-07-26T17:07:00.000-04:00

We have been having some good times here lately. Not all great, but so much better than it has been going. So of course I'm barely talking about it, ha! I do feel like the wind has sort of been taken out of my blogging sails, with all this stupid crap at his school. I am nervous about everything I say, but I'm trying to fight it. Anthony seems to be doing well, he is working with Pam again, who he likes so much, and we are starting more OT and toilet training next week, so I am not going to complain.

I am eager and nervous and scared about toilet training. He has been sitting on the potty and going, starting last week, which is amazing and promising. The thing is whether or not we are going to be able to parlay that success into real success with training, but we'll just have to wait and see. We are starting Intensive Toilet Training on Monday and we'll just have to see how it goes. I only wish I weren't pregnant so I could be drinking a lot more, ha!

It's so weird, I can't even imagine it, not changing diapers for Anthony. I know there are people who wear diapers their whole lives and I make no judgment on it, what can you do? Some people's bladders and brains are more connected than others, big whoop. But if it's a possibility for Anthony to do it, well, I'm excited about it. I bought underwear for him today, cute boxer-briefs, and it was very exciting. I am determined to not get my hopes up or get too far ahead of myself, so I'll just report the facts of the situation right now which is that we're starting training next week. It's not going to be easy, he has to do a lot of sitting on the toilet and spend a lot of time in the bathroom, but ... who cares? He'll have some of his favorite things in there, reinforcing things, and it's a bathroom, not an OUTHOUSE or something, so while it's not pleasant it's not the most miserable thing, either.

We all went to church again on Sunday and Anthony made it for about the first ten minutes and the last ten minutes, so ... not terrible. I am hopeful we can stretch it out a little at both ends and do better. The problem is, as usual, other people. There's a lot of old people at our new church and I guess they are grumpy about the Big Hand of Death getting ready to snatch them, because there was some eye rolling and some general crappy feelings coming our way when Anthony was doing, well, nothing, just sitting backward in his seat, looking at them, etc. We're going to try to sit up a little closer to the front where there are more families and try and blend a little better.

Today I went to pick him up at school and we went to get DQ after. He likes an ice cream sandwich, so I got him one and got kids' cones for the girls. We went home and they played in the driveway while I went to get the garbage cans and recycling bin from the end of the driveway. We hung out there for a while and then I was trying to usher them back in, when Anthony went over to the basketball hoop, picked up the basketball and threw it toward the hoop. !!! What the hell? I've never seen anything like it, Maria and Veronica were so happy - it has to be the most appropriate play he's ever done and we were all GOBSMACKED. Then he came inside, like, no big whoop. I guess the lesson there is that you can put the autism in the Hoosier but you can't take the Hoosier out of the autistic kid. Or something. Anyways, it was amazing. Like Anthony.

July

2011-07-21T22:44:00.001-04:00

We're flying through July, right? Tomorrow I am going to be 28 weeks pregnant, and Anthony has been back in school for two full weeks. It seems like his camp was a long time ago. He is doing well this week, I am happy to report. He is a sweet thing. Tonight I read on Facebook, a friend of mine posted about her son:

I wish I could snap my fingers and help (her son) communicate clearly and succinctly so everyone in the world could understand him and love him as much as we do.

I commented and said, I hear you, Mama, and I DO. I read this and got kind of sad but then I thought, welllll, I wish I could snap my fingers and do LOTS of things with regard to my kids. Maybe GOD felt like he wished HE could have snapped his fingers and solved the Sin Problem but he couldn't, he had to give up his only Son for all of us. Not to get too crazy here, but - well, I'm crazy, here, and this is what I think about. I wish it were easier but it's not. Anthony's therapist came out with him today and she said that he peed TWICE on the toilet today. Peed on the toilet! Anthony! To me, that is a miracle and if he just started doing it, three years ago, without any work or thought about it, well, it would not have been the same.

I know we have a long way to go. I know the future is .. murky. But I don't care. This week he had a good week and he's so cute and sweet and I couldn't love him more. That has to count for something, we all just love him so much and I know he can feel it, even if he doesn't always understand it. Our sweet Anthony. Our good boy.

Favorite Thing

2011-07-16T12:33:00.000-04:00

Right now he loves those hangers. It's better than knives, which he used to favor, remember? He's not quite tall enough to reach the hangers in the downstairs closet, so he'll come and get me and when I prompt him, he'll say "hanger". It's not a bad thing, I suppose, to like to play with, but it's still a pain. He only likes the one hanger for a while and then he drops it and wants to get another one. Some of them, he has snapped the bottom in two, and he doesn't like that. So don't break them, I tell him, but he doesn't get it.

He had a pretty good week, I think he was happy to be back at school and back on a schedule. His sleep was much better. I think his days at school are going okay, too, so that's good. Today was his last day of swimming for a few weeks, they are finished with the summer sessions at the Y. It got a little screwy for us at the Y where he was going, they switched directors, etc., so maybe he can go to the WAVES program at another Y, we'll see.

We are trying to ignore his tantrums and it seems to be going well. It is very challenging to ignore such heartbreaking cries and yells, but we have to. Any reaction that we have is too much reaction and, I think, is confusing to him. I don't think he can help having the behavior, but I think we can help our reaction so that's what we have to do. It's so screwed up, I hate it, but we have to keep trying different things to make it better. If I had one wish to be granted, it would not be that he would sleep better, or that there was a magic 'go away autism' pill or whatever. If I had one wish to be granted, it would be that I could know more. That I could have more support and more help and more information. I think this and then I think I actually do have more information available to me, I just have to keep plugging away and trying different things until something works. There are no experts for us to count on, not in the way that we need to count on them. All we can do is keep cobbling together information and make something work for Anthony and try not to lose our damned minds in the process. So. That's what we're doing. That and buying more hangers, ha!

Church/Back to School

2011-07-10T20:09:00.000-04:00

We all went to church again today. It was rough, we got kind of lost AND the Mass was earlier than we thought so we were too late to get a seat in the back. Mike took the girls in and I sat outside the church with Anthony, which was fine. He is pretty good, actually. Really, I had more trouble with the people WHO DO NOT HAVE AUTISM than with Anthony. At one point, he wanted to lie down on the slate tile, which, who can blame him? It's super cool and it's wicked hot today. So I took him outside, between the indoor and outdoor doors, where there was slate but no people, and I could still hear the Mass. TWO different families came in after NINE THIRTY! For a NINE O'CLOCK MASS! I mean, I thought I was safe, 30 minutes in, but noooooo. Also the men that were singing were so loud, I wanted to cover MY ears and I don't have autism. But he was still good. We went in for communion and sat for a few with Mike and the girls and then Mike took him out.

He goes back to school tomorrow and I'm sure he'll be happy to see everyone and get back to his routine. He is going to start working with Pam, who is one of his original therapists, tomorrow. I'm excited, he loves her and had a lot of success with her. I'm hoping all the hubbub is calmed down at his school and we can just move forward. We start toilet training here in a few weeks.

He has had a rough, rough weekend. I am just hopeful that it will get better. I've been doing a lot of reading on tantrums and what to do and I am going to adjust our behavior a little bit in the hopes that Anthony adjusts his. Something has to work, sometime. I hear him so miserable and I think what else can I do? I pray and pray and right now - not for nothing, that is not working. It is not making his tantrums go away. So I have to pray for something else and I guess that is the sense to go back to the drawing board and figure out what else I can try. I just wish I wasn't so tired all the time, I feel like if I had a little more energy, I could really get something going here. Oh, that cocaine were legal and good for you. And for little unborn babies. Ha! Kidding!

Fly High as a Bird

2011-07-07T22:17:00.000-04:00

Anthony got the "Fly High as a Bird" award at camp today, because he likes to jump so high on the trampoline. They had a cute little ceremony where they gave out the awards and where each group sang a song. Anthony was in NO MOOD and the sweet girl that works with him took him for a walk during the ceremony to calm him down. Poor baby, he has had a rough week. I have no pictures because he ... well he just didn't look very happy.

But overall it's been great, just yesterday and today were rough. Yesterday they called me from camp, he was having a 'behavior' and I guess they just wanted to check and see if I had any strategies. They said it had been going for almost 20 minutes and I told them that it's v. rare for it to go longer than 30 minutes, so call me back in 15 if he was still going. But they never called. There's only one boy there, and when I got there, he seemed SO worried and upset. He said he hadn't ever seen anything like it, there was no trigger, they weren't bugging him to do anything, he wasn't sick, etc., etc., basically everything we've been thinking for 17 months. He was so nice though - he said "we really love Anthony and even with the behavior today, he is still great!". So that was sweet. Anthony seemed so tired when I went to get him, he had woken up at 1:30 that morning, poor baby. Then he was up late last night, on and on, just - the end of the week is the end of the week, whether he is in school or at camp or on the moon, I fear.

It's after 10:00 now and I think he's quiet. I am praying, PRAYING as hard as I can that he will sleep tonight and have a good last day. He goes to the zoo tomorrow, which I know he'll enjoy if he feels good. It's funny - we took Maria to the zoo today and she was IMPOSSIBLE. We had to leave because she was freaking out because we wouldn't let her take her clothes off at the splash park. I had brought clothes for her to change into, but not a swimsuit because frankly it seemed like a little much. Anyway, we just had to take her home, she was short circuiting everywhere. It's so much easier to take from her, even though it's not pleasant, because she does seem to be in control of her behavior for the most part. With Anthony, it's like he's having a seizure or something and you can't get mad at someone for that. You can, I find, feel like your heart will break for them, but you don't feel mad, exactly.

We went to the splash park today after camp and he seemed happier the rest of the day. I think that's all we can do at this stage - just find something he likes and do it as often as possible. I just wish he liked to sleep more, ha!

Sunday

2011-07-04T10:37:00.000-04:00

Boy, you'd think it wasn't the Lord's day, the way I go on and on about hating Sundays! But it was kind of a rough day. Today is actually worse, as Anthony hasn't been to camp or anywhere since Thursday and he is going mad. He keeps pulling Mike toward the door. Tomorrow, we keep telling him. Tomorrow you can go to camp! Mike is off this week so I feel much better than on a normal weekend, I don't have the usual dread.

Yesterday was a big day - Anthony went to church with us, we all went, for the first time ever. Anthony hasn't been to church at all since Maria's christening and we have never gone as a family. It went - not that bad. I told Mike I gave it a 6.5 and he gave it a 5. I think I was judging it on an overall perspective and he was judging it on how much he felt like he went to church. But I still think I am more right (not shocking). Because Mike is used to going either by himself or with Maria and I think LOTS of people who bring their kids to church, any kind of kids, don't really hear too much of the Mass. But we are there and that's what counts. Also, I hate the church that we go to, so I don't feel like I'm missing out on much.

Another thing that happened yesterday was that it was the first time I saw another kid point and say something about Anthony. Unfortunately for that kid, I was right there and heard it and I talked to him. Unfortunately for ME, the kid was actually very sweet and he cried and apologized, so then I CRIED because I am a loon, and it was a big fat mess. Here's what happened. A friend of mine told me about this splash park right near us, and it was one billion degrees yesterday, and Anthony seemed to have so much fun at the zoo splash park yesterday, I thought we should try it. So we finally found it, there is construction underway on the same block as the park, and it's in a HORRIBLE neighborhood, but then poof! there it is, this really nice splash park appears out of nowhere. Anthony really liked it, he was having so much fun, and Maria kept running around yelling Best Day Ever! and it was just great. So Anthony was playing and some kid, about his age, pointed at him and said to a girl with him, "look, that kid is wearing a swim diaper". I said, yes, he is, would you like to talk about why? Or do you just want to point at him? The kid looked TERRIFIED and ran to his mother, who was sitting over on the side. I saw her hugging him and I saw his shoulders shaking from crying and I ... I felt terrible. I tried to tell myself that Anthony didn't care, because he absolutely does NOT, he didn't hear that kid and he wouldn't have cared if he DID hear him, but still. Waaah. I am a crier and I am pregnant and ... I'm just a wreck, I was a wreck. So anyways, then the kid came over and he said "I'm very sorry I said that about your son". I said, that's okay, thank you for apologizing. I couldn't say anything else, I mean, seriously, I may have frightened this kid, I was getting VERY upset. I was thinking about toilet training and how I want it to work, I feel I owe it to Anthony to provide him with this training. I started thinking about how this kid was pretty young, and how he's only going to get meaner as he gets older and what in the WORLD is going to happen to Anthony? But - for right then, this poor six year old was being very brave and apologizing to me and I just didn't want to scar him forever. So that's all I said was thank you and it's okay. Then I ran to get Veronica, who wanted NOTHING to do with the water and was in the playground area of the park.

Then the MOTHER came over - honest to God, I didn't think I was going to make it. I am not trying to be dramatic here, but man, I still hadn't gotten it together from the original incident. So anyway, she of course was very nice and she said she was sorry her son said that, but he just had never seen it before. She said thank you for saying something to him because it was a great teachable moment for us. A small, mean part of me wanted to say, I'm SO happy that my son has autism and is still in a swim diaper at six so you could teach YOUR son something, but - let's face it, that's just mean. There was nothing wrong how anyone was reacting to this situation except me and I am a known loon. So I said, thanks for having him apologize, he was very sweet. And that was that! Meanwhile, everyone else was having a great time so I just tried to shake it off and we continued to play.

I just - I know it's just the beginning, right? People can be real jerkstores. I don't need to learn that, so that's not my teachable moment for the day. What was, maybe, is that it's proof to me that we are starting this training at just the right time. And that even if people have doubts, I have to push on and make something work for Anthony. I have been doing a lot of reading on this intensive toilet training and there are several pre-requisites for kids that are going to do it and even though Anthony doesn't have all of them, he has several, and this training has been successful with many, MANY children who have met even less of the pre-reqs than Anthony has. So I am just not going to worry about what any naysayers may say. We are going to make this work, in one way or another, even if it kills me.

Day Off

2011-07-01T18:45:00.000-04:00

So he has off from camp today and off on Monday, which I didn't realize. I guess normally they have off on Fridays, the staff does something, but because they have off on Monday for the holiday, next Friday they'll go. Next week he goes back to the horse place, where he may or may not have time to try to ride a horse again, and also to the Zoo.

Today was kind of a mess, Anthony-wise. He had a good, sleepy night, although when we went in to get him this morning he was completely naked. I even went in and checked him about 11:00 but it was dark and he was under his blanket, so I guess I didn't see. I honestly don't know how we will ever get anyone toilet trained for night time, Maria, Anthony, any of them. Ha, I am toilet trained but I do have to go to the bathroom in the night, ha! Maybe we should ALL start wearing diapers to bed and we'd all sleep better.

Anyway, he got up and we hung around for a while but there is a point, when everyone is home with me, where they just are too much for me. Anthony is pulling the food out of the cabinets and Maria is climbing up on something else and Veronica is outside near the pool and I just - give up! So we went to Dunkin Donuts and drove through the creeeepiest drive-thru ever. It's behind the building, it's so narrow you'd never get out if someone sprung on you, it's awful. But it would be better to be held up at gunpoint than to try and take the three of them in there so I do it. Anyways, we got donuts and bagels and went to my parents' house. We had a fun time, played outside, etc., and we stayed for a while. Mike found out he was getting home early, so we went home to meet him.

He wasn't home when we got home so we hung out, of course, in the drive through. Oy, we are a MESS. Maria's clothes got wet at my parents' house so she was in underwear and sandals. Anthony had taken off his shirt, so he was in jean shorts and that was it and Veronica was just in her shirt, as her pants got wet earlier. And SO many neighbors of mine walk by, hi! Hello!, they say, and I say, all tense, "HI!", trying to sound like I don't have three naked kids in the FRONT YARD and they are not all at the far ends of the property line, torturing me.

Anyways, then we had lunch, Veronica had fallen asleep on the way home so no nap for anyone, and then 42 hours passed between noon and six. Anthony had a couple of minor meltdowns but mostly they are for a reason here lately. He's hungry, he's dirty, he wants to take his clothes off and rub up against me and I DON'T want him to, etc. Ugh, sometimes he wants to rub his belly on my back and he does and Veronica will come over and sort of pet my leg while he's doing that, and I think about adding a baby to the mix and NURSING the baby while this is going on and I think I hope this is one tough baby. Ha!

Hair Don't

2011-06-30T13:34:00.000-04:00

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

2011-06-29T19:43:00.002-04:00

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

2011-06-27T21:46:00.000-04:00

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

2011-06-25T22:27:00.000-04:00

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

2011-06-22T12:44:00.000-04:00

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

2011-06-21T11:42:00.000-04:00

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

2011-06-18T10:04:00.000-04:00

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

2011-06-15T13:10:00.000-04:00

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

2011-06-11T10:00:00.000-04:00

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

2011-06-03T17:35:00.001-04:00

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.

Saturday

2011-05-28T10:36:00.000-04:00

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

2011-05-24T18:18:00.000-04:00

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

2011-05-23T19:37:00.000-04:00

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

2011-05-22T10:33:00.000-04:00

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

2011-05-21T10:59:00.000-04:00

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

2011-05-18T20:03:00.000-04:00

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

2011-05-15T10:17:00.000-04:00

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

2011-05-09T12:54:00.001-04:00

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

2011-05-06T14:30:00.000-04:00

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

2011-05-04T13:20:00.000-04:00

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.

We are on a Break

2011-04-26T20:13:00.000-04:00

I am going to take a break from updating this blog. Every day I think of updating it and every day it's so depressing that I just can't do it anymore. If you want updates, early in the morning and around 8:00 at night, just picture screaming and crying and flopping around. Picture yourself hearing the screaming and crying and seeing the flopping around and not being able to do anything about it. Feel super helpless and sad and as if these tantrums, and the inability to do anything about them is sapping your will to live. Then it will be just like reading the blog, only without the cute pictures.

Friday

2011-04-22T20:06:00.000-04:00

For us, there is not a worse day than Friday, which is funny because it used to be my favorite day of the week. When I was in New York, we'd make plans all day and then do something in the city for happy hour and then wind our way back to Hoboken, nowhere to go, nowhere to be. Today:

we woke up before 6:00 to the strains of Anthony having his fifth horrible wake-up tantrum in a row. Mike went in, then I went in, then we both left, then the girls woke up, then he tantrummed some more, and then he came downstairs and lay on the couch, just fine.
took the girls to get some donut holes for my friend Emily's house. I pulled out in front of this car, that was waaaaay behind me and I tried to quickly get up to the speed limit before the car was close to me, and succeeded. But the LOON behind me was riding my ass, waving at me, all mad. Of course, they turned left where I did, so I had another mile or two of them riding behind me. And of course, I had to stop at the bakery right off of the road, and I was afraid they were going to pull behind me. If I was by myself, I would WELCOME that fight. I swear to God, I am a loose cannon these days! But I was with the girls so instead of looking for a fight, I dialed "911" and just made sure the woman didn't follow me. She didn't. We got the donut holes and I got some milk because I didn't have enough and I felt like even though it was a fast day, I should keep eating something because sometimes I feel a little sick if I don't keep eating. But I forgot the milk and I had to put the girls in the van, then drive up and run in and get the milk. The IDIOT behind the counter said, "was that your milk?" when I came in and I thought, bitch, please. You KNOW that was my milk, you just CHARGED me for it. There are like SIX of them behind the counter, I was obviously with two little kids, it would have killed you to come after me and say "hey! You forgot your milk!". So. Annoyed.
I had a nice time at Emily's and the girls were good and seemed to have fun, so that was great, although Maria did "pee, just a little, on her underwear". Maria has entered some phase of toilet training where she thinks a little pee (or poop) is no big deal. I am working on it and mad at myself, because I have been trying to not freak out on her, and to tell her, "it's okay, just keep trying". Now she pees "a little" and thinks it's some kind of victory!
I took Maria and Veronica to P. Flynn's for lunch, Maria wanted chicken and fries and I'd rather go there than McD's but OMG was she bad. Baaaaaad. Freaking out, crying, just ... bad. And my friend Tim went into the game room and won them a toy, even! Just bad! But we made it through and went home.
Then the girls napped, which is good, because it gave me a little time to sit down (15 minutes) and some time to clean up before Anthony and Amy and Lisa were all coming for home therapy.
Maria and Veronica were up shortly after Anthony got home, and it was... difficult. Maria is a difficult person, she just is. She is FINE if you want to do everything she says but the minute, the second, that you tell her that you can't do it RIGHT THEN, it all goes to hell. It is beyond exhausting to be here with her for V's speech therapy and for A's home therapy.
So I talked a lot with Lisa, from Anthony's school, and I feel good about where we are. I am hopeful that things will start to come together and I am really excited about the iPad and where that will lead us.
But Anthony had one long episode and a few short ones. Then those guys left and Mike came home.
I forget why, but I had Maria upstairs in her room, so when Mike got home, I just went up and let her out and went in my room for a timeout so I wouldn't kill anyone.
Mike gave the kids dinner, and they don't eat a bite and then they get baths and brush their teeth and want to come downstairs and eat everything. Should I give them dinner after their baths? Send them to bed hungry? I feel like this would bite me in the ass.
Mike went out to get some milk for me and some dinner for us and right after he left, Anthony dumped out a whole pitcher of Crystal Light grape juice. It went everywhere so I cleaned it up and the whole time he was waiting, patiently, for me to clean it up and then give him some freaking juice. I cleaned it up and then I walked out of the room and BOOM! he dumped his chair over and I took him up to bed. I am over him - he just gets to a point in the day where he is just going to destroy stuff and I can't take it.
I have picked up, no exaggeration, hundreds of things today. He drops ice cream sandwiches everywhere and I don't always find them right away. He is upstairs screaming right now so I am going to have to go up. He's extremely tired, up before 6 every morning this week and up late at night, and so, so screamy every morning. It has to be tiring, right? I said to him before, when I was leaving his room, just go to sleep. It's Friday, tomorrow is Saturday and you can sleep in. I don't know - is his receptive language not that good? Does he just not want to take my advice? It's all a mystery. A stupid, boring mystery, not a good, exciting Agatha Christie or something.
Thank God it's Good Friday, because I keep thinking of redemptive suffering. I hope there is something to it!

School

2011-04-16T10:53:00.001-04:00

I have lost the charger for my camera battery so you will just have to picture Anthony in your mind for now, he's as cute as ever.

I've been thinking about school so much lately. Anthony is - he seems to be stalling at school and not making any real progress, to me. I talked about it with one of his therapists and I guess he probably *is* making progress, it's just the teeny tiny progress that you can't see very well. You certainly can't see them through all these tantrums, that's for sure! I think, well, maybe he's not at the right place, maybe a traditional school would be better for him and then I think, maybe this is just what he's capable of, right now. Maybe he's ... I hate to say it - maybe he's more severely affected than I will allow myself to think, maybe he's not making much progress because he just can't. It's hard to know where to draw the line - I don't want to move him around and keep pushing, I know he is trying as hard as he can, I just want to be sure *I'm* trying as hard as I can, too.

A long time ago, a friend of mine was talking about her daughter, she was saying how mean she could be. She said that her daughter was having a birthday party and she didn't want to invite this kid with autism. My friend told me that her daughter said, "he's not going to know!". At the time, I remember thinking, "good point". But now I think, I bet that kids mother knew. And maybe that kid DID know. And if I send Anthony to a public school and he visits a regular classroom or whatever, or if he ever gets mainstreamed but can't actually BE part of the mainstream, is that going to happen to him? And then my head explodes from sadness.

I keep reading this thing on Facebook, where apparently it is SPECIAL EDUCATION WEEK every damned week, where it says something like, "won't you please be kind to these kids with autism, who will surely be bullied and treated badly?". I think, really? Why is it just understood that if kids with autism, if MY kid with autism, tries to go to PUBLIC SCHOOL that he will be bullied? Boys will be boys? Kids will be kids? Humans will be GIANT jerks? Ugh.

Anyways. It's going to be summer soon and I feel like we have to make some choice, every fall, about how Anthony is going to continue. I wish I felt like he was making more progress at his school. I'm going to mark how he does in this camp this summer, away from school for two weeks, and maybe decide from there. He is so unhappy, he seems so unhappy and I wonder what is he trying to tell me? Is he trying to tell me he's sad? Or is this just the way it is? What I want to know, Lassie, is if Timmy is down the well or not, ha!

Saturday

2011-04-09T09:01:00.001-04:00

Mike took the kids to get donuts and bagels and coffeeee and juuuuuuice, so I thought I'd update. He is doing pretty well with the iPad, we are going to have to find our way with it, and he certainly hasn't just picked it up and started communicating, but he is interested in it and that is a great start.

I downloaded some free apps, including these ABA Flashcards. He likes the alphabet one, which shows the alphabet, obvs, and a word that starts with the letter, AND a voice says what the thing is. Like A is for Airplane and a nice woman's voice says Airplane when you look at it. You can either arrow to the next letter (B, for those unfamiliar, ha!) or you can swipe your finger across the screen. This is what we are trying to get Anthony to do. After four or five letters, it plays beautiful classical music and shows notes dancing across the screen. There's also animals, food, emotions and ... something else I can't remember. Anthony likes the alphabet and the animals, so far. They were free for the month of April. We have good timing, at least, in getting the iPad, because there are a lot of discounts and free apps for Autism Awareness Month.

We downloaded the Grace app, which Anthony and his speech therapist are working on. I had seen it on a friend of a friend's blog, she showed how customizable it was and it is. Anthony is not taking too it too well, yet, but we are hopeful he will come around. It's sort of based on the PECS system and Anthony has never had too much interest in pictures to communicate, try as we might. He always just hands us the picture and says what it says in his voice, and he's kind of patronizing about it, as if WE are the ones that need the picture. I have been talking to the programmer of the app and have gotten some great information.

We bought all of Anthony's favorite Signing Time songs for our iTunes a while ago, and then since I forgot, I bought them AGAIN last month, and I also bought a cd for Anthony to have at school, so I moved his Signing Time songs to his iPad and he really, really liked it. Then Mike mentioned maybe there were videos we could buy so I looked on iTunes and while there weren't videos available, for only $4.99 I found a Signing Time App (cue angels singing, crying in happiness) and it has flashcards AND videos, INCLUDING Anthony's favorite, which is "Show me a Sign". I love it too, actually, it was one of our first songs, when he was so little, and I bet I sang it 1000 times before I could sing it without crying. The lyrics go:

How are you doing, little one, my little one, my little one
I'd like to know what's on your mind.
Our days together, time together, you and me, are one on one
These are the times that make me smile - you make me smile!
Tell me that you love me, tell me that you're thinking of me.
Tell me all about the things you're thinking, day and night both day and night.
Tell me that you're happy and you love it when we're laughing. Tell me more, tell me more,
Show me a sign.
Every day you grow up more, you teach me more and more what I'm here for,
and every day I love you more, I love you more, I love you! (this is typically where I really lose it)

Waaaah! We love it and he loves the song but also the signs, so now his therapists can use the app to see the video and learn the signs themselves. So. Winning! is what I'm saying.

I also had two apps sent to me from Ruckus Media and we are going to start checking into those this weekend. I also want to get the app iCommunicate, which I hear great things about and which I think might be a good transition for Anthony to the Grace app. He seems to like to hear words and it intrigues him, coming out of the iPad and we want him to be interested in it first.

iPad

2011-04-06T14:11:00.000-04:00

We got Anthony's iPad yesterday and sent it with him to school today. I am so hopeful that he will like something about it and be interested in it.

Mike and I were talking today about it and I told him - it's so hard to be stuck in the place we are right now, with Anthony. I think I can safely say that he hasn't made any real progress in a long time. A year? It feels like the only thing that has increased for Anthony in the last year is his tantrums and his teeth grinding. These are not great goals to have met! It's hard for Anthony but it's hard for us, too. It's hard to not move forward at all, especially with Maria going great guns right beside Anthony. Even though Veronica isn't talking, really, at all, she is moving forward, she is very engaged and you should see her point at things in a book.

But we are in the same place with Anthony, all the time and it's very wearing. I'm sure it is on him, too, even though he doesn't say it. We are human beings, and HE is a child, he is supposed to be learning new things every day and living his life and I feel like he can't.

So. This is getting kind of depressing, I guess. What I'm trying to say is that I hope something works with this iPad. But Mike says, and it's true, if it doesn't work, if Anthony doesn't seem to respond to it, we will just try something else. We will just keep trying things until something works. Or until I have to go live in a home for the criminally insane. Whichever comes first!

Hair DON'T

2011-04-02T12:57:00.001-04:00

What in the hell is going on with that hair? It's long, right, so I cut his bangs yesterday. Sweet Amy was here for home therapy and she offered to help so we did it. But he got very upset so all I could do is take one SWIPE across his forehead. He looks like a dutch boy in the front and a party in the back, now. If I could have *one* minute, I could neaten them up but it's honestly not worth it, he gets very mad. He doesn't know what is going on and he just - well I mean, I don't blame him but it's unfortunate. But the back! It was all weird this morning, he needs it washed, I guess. I have to work tonight so Mike is going to be bathing him alone - usually I wash his hair but it has to be done tonight, it's so strange looking. I figure maybe he had a rough night, got all sweaty, etc. I have told my family and said on Facebook but we are having another baby in October! I am one of four, and now (for now) Anthony will be one of four too, I guess. My mom had a boy, then two girls, then a boy so I think maybe that's what I'll do too. There is no actual genetic reasoning for this, it would just be funny is all. I told my mom I was afraid that I'd have a boy and he would be just like my little brother John, ha, and my mom told me that John was a *very* good baby, so there's that. Anyways, I think it would be nice if Anthony had a brother. I love the idea of brothers and I think it would be nice if I had some tough-guy fourth child who could beat anyone up if they ever gave Anthony any trouble. I am a violent person, down deep, ha!

Autism Awareness

2011-03-30T19:45:00.000-04:00

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

2011-03-29T16:38:00.000-04:00

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

2011-03-27T18:40:00.003-04:00

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

2011-03-23T19:38:00.000-04:00

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

2011-03-20T19:03:00.001-04:00

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

2011-03-19T13:31:00.001-04:00

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

2011-03-13T10:01:00.000-04:00

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

2011-03-12T15:37:00.000-05:00

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

2011-03-12T12:03:00.000-05:00

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?

2011-03-08T11:50:00.000-05:00

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

2011-03-02T18:28:00.001-05:00

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! :)

Books

2011-02-27T11:55:00.000-05:00

Anthony's old therapist Pam told me at Christmas time that he liked these Search and Find books. At his school, they have a GIANT one, it must be 2 by 3 feet! I tried to find him some for Christmas, my sister found these big ones at Home Shopping Network but they are not board books, so there has been some ripping. I have taped the HECK out of them by this point.

So. Enter my brother Larry and his family. They gave the kids Barnes & Noble gift cards for Christmas and yesterday I took Anthony on a little outing, just the two of us, and we bought some new books. I bought books like these, mostly. I bought one about People, Places, and Things, one about Places to Go, and ... another one. For the girls, I bought an Elmo one (Veronica) and a Princess one (Maria). I figure they'll all like the seek and find-ness of it. Anthony really seems to like them. His favorite animal is the pig and he loves when I make a pig sound right in his ear. Unfortunately, I have a bad cold right now and it sort of makes me sick to do it, but I have to persist, he loves it so.

Last night, he was super tired and he got *very* upset before he fell asleep kind of early, I guess around 8:30 or so. Mike and I went to bed early because we figured he'd be up early. Veronica woke up at 3:20, though, and we let her cry for a while but we were worried she'd wake up Anthony so I got her for an hour or so and then Anthony DID wake up around 4:00. Meanwhile, Veronica was up until like 4:45 or something and went back to bed, but Anthony never did. It's an insane asylum around here, sleep-wise. Otherwise, too, actually, ha!

Hair Don't

2011-02-26T14:13:00.000-05:00

Isn't he so cute? His hair was like that the other day when I went in to get him and I called Mike up to look - I couldn't believe it, it looked like a tornado was in it or something. He kills me with how cute he is. He had an okay week, even though he had a stupid SNOW DAY yesterday. It's crazy - we were up at 5:00 and we saw that the school system that his school goes by had a delay, which made us happy because that means he'd have regular school. Then at 7:00 Mike saw it was a delay and then at like 7:30 they had changed it to them being closed. What in the hell? I would think by then some people may have already left to go to school. And OF COURSE, everything was FINE by 9:30 or whatever. Here's the thing - it was snowing and there was some wind. But my LORD - it's winter! It's Indiana! What are we to expect? And I know that his school has to go by some school system or another but it seems SO stupid that we have to be closed just because a certain school district is afraid of their richie-rich students and parents being upset because the little darlings might get some SNOW on them. Veronica's therapist lives there and she said that normally the town plows all the side streets but that they hadn't gotten to them when she left for our appointment (8:30). And I feel for them but BOO HOO, they never TOUCH the side streets in Indianapolis! I think there are like 10 major roads that they plow and that's it! Suck it up, suburbanites!

Mike had to stay home from work because I had Veronica's speech therapy and then I had to take Maria to ballet and I just don't know how I'd do it with Anthony, too. The funny thing is, Anthony is really not the problem but I can't beat Maria down during Veronica's therapy and watch Anthony and I can't watch Anthony while Veronica exits the damned building every two seconds while Maria takes ballet. Also, Anthony's tantrums are back with a vengeance and it would be hard for me to control him and the other two if he were to get upset. So. Mike stayed home and we are lucky he's able to, I don't know what I would have done otherwise. It makes me wonder what do other people do. What do single parents of autistic kids do? Ugh.

Anyways. So his tantrums are back and that stinks but we had that excellent week where he was sleeping and never having meltdowns and that still happened. Like I think of it when he's yelling now, how sweet it was when he was happy. I know it's possible now and it will be possible again, I just have to wait.

One of his therapists told me this week that they have figured out what his problem is - I mean, why he gets upset, and that it is jealousy, straight up! She was training a new therapist who is going to work in the new facility, and she said every time she took her attention off Anthony to tell this other therapist something, Anthony would get mad. It is reassuring to me, because that's what we find at home, too. He mostly gets upset when he is left alone, when we are doing something with the girls. BUT lots of times we try and do stuff with him and HE leaves. So it's a conundrum, still, but it's nice to have some information. As my sister says, it's fun to be fooled, but it's better to know.

He is still enjoying swimming, I think he really looks forward to it and is glad to be here. We filed our taxes and we're going to get him an iPad when we get our money back. Maybe some day it will be above 50 degrees again and we can go outside more and all be happier. Oh, we did go for a walk yesterday, just Anthony and me. We went down the sidewalk a ways and then turned around and we came back and he turned right into our driveway and headed up it. It made me happy, to know that he knows where to turn. I know that might seem dumb but ... well anyways I am glad.

With Amy

2011-02-19T10:36:00.000-05:00

We have certainly had some bumps in the road with home therapy, but overall it's been going pretty good. The only reason it goes well when it goes well is because of Amy. By the time she and Anthony get here now, Veronica has had speech therapy and then Maria has ballet and both are difficult because I am trying to corral the person who is not the center of those activities and I am pretty cooked by the time they get home. But Amy plugs away with Anthony and she deals VERY well with Maria and Veronica and we just get through the afternoon. Yesterday they played outside a lot and then Amy and Anthony took a short walk, and it was a great success. It's successful for Anthony and the girls, and also for me, because it's nice to have someone to talk to!

Friday

2011-02-18T16:03:00.000-05:00

Anthony had a good week, we are just skating along on our new schedule of sleeping well and not having tantrums. He had swimming last night and he did just great. I didn't take him last week, so I was really happy to go last night. We go to the YMCA, and I - actually I think we are just calling it the Y these days but it is amazing. I can't get over how kind and wonderful everyone is there. It is in a not-so-great part of town and the one where Maria goes to preschool is in a better part of town but the difference in the way we have been treated is amazing. At Anthony's Y, the Aquatics director comes over every week and calls Anthony by name and asks how he is. Since we missed the first three weeks, we are just moving right into the next class and we are going to make up the ones we missed at the end. The teacher is just wonderful with Anthony, the lifeguard is really nice and cheers him on. When I went to Maria's Y with Anthony, years ago, for a swim class, it was a nightmare. The indoor class was moved outdoors, it took me hours of hounding the Aquatics director on the phone to get the money back, it was horrible. They're just not as nice. Why is this? Are people nicer in worse parts of town? Is it a coincidence? I know not.

ANYWAYS. Amy came over today, we played outside some and ate some and she and Anthony took a walk. We are making plans for some super fun outings when the weather gets better. I'm bullish for the future.

My Sleepy Valentine

2011-02-14T21:00:00.000-05:00

Of course he's yawning, he woke up around 3:00 this morning! He is STILL up and it's almost 9:00! What is he made of, what kind of strong stuff? He is doing well, sleeplessness be damned. He has moments where he struggles, but he's doing so, so much better. We all went outside today and he was jumping and spinning, so excited to be out. He is the love of my life, I feel like. Ha, he would actually make a bad boyfriend, I suppose, what with the kicking me in the throat and the worrying me. But I just - no one has ever needed me as much as Anthony and instead of it feeling kind of choking and scary, it feels exactly right. I feel like we are right where we should be, all the time. We went for a walk this weekend and I was saying, remember Anthony? Remember when it used to be just me and you and we'd walk every day? He, of course, didn't answer but I think he hears and understands me. I think he misses it too. :)

Swimming

2011-02-10T19:28:00.000-05:00

Mike took him swimming tonight - through a series of early wakings and non nappings, I am exhausted and I didn't want to drive Anthony to swimming, so Mike took him. We should probably trade off anyway, so he's used to going with either of us. Anthony is not a person who is really hung up on routine like that, but we may as well try to avoid it where we can. Plus it's super fun to watch him have such a good time. For some reason, his lesson was only 30 minutes instead of 45 tonight, I'm not sure why, but that's probably enough for him anyway. He had another good day today. I can't even really talk about it, I can't stand to think that we might be free of these tantrums. I mean, not even completely free but just to be given a break like this feels like an unbelievable miracle.

Ooh, he is driving me batty in other ways, though. He takes EVERYTHING out of the silverware drawer. It's ... it's insane, I told Mike tonight, I was thinking of where I could keep all the stuf in the cabinets and drawers but the fact is, I have to keep the stuff that's in there IN THERE. I just hope to keep telling him no and redirecting him and maybe someday he'll get it. Of course, both his sisters do the same thing so several times a day, it feels like, I take everything that's been in every cabinet and drawer and put it back. Maddening. Also, tonight, not to talk to much crap about him, he went upstairs and ran the water in the bathroom sink, that he was SITTING in, and the water ran everywhere, quite a bit of it. It took about 12 towels to clean it up. Sheesh. I try to think of it as an adventure and a lesson but man. It's tiring.

Big Day

2011-02-10T12:34:00.000-05:00

Last night, as I was going to bed, it dawned on me that Anthony hadn't had a tantrum all day. I have this new plan with his tantrums, which is to completely ignore them until they're over and then when they're over, offer Anthony a treat and tell him how glad I am that he feels better. I also have been talking a LOT more to him, just in case he is worried that we won't take care of him or something, I tell him all the time that we ARE here for him and that we LOVE him and that we will ALWAYS take care of him. So maybe it's a combination of those things, or maybe it's for no reason at all.

Either way, I don't care, I just want to go on record that yesterday he didn't have any tantrums at all. This morning he woke up at 4:00 and was miserable at 5:00 when he was dirty and we had to put him in the damne bathtub but I don't care. He had a completely good day for the first time in many months and I'm thrilled about it.

Mad

2011-02-06T10:03:00.000-05:00

Sometimes he gets really mad, Veronica was all up in his grill and he didn't like it. He had a pretty good day yesterday, he had a few near-misses where I thought he was going to have a tantrum and he didn't. Last night one of his old and most favorite therapists came over to babysit and they got to spend some time together after the girls went to bed, so that was nice, too. It was snowing before, but we're not supposed to get much, so I am assuming he'll have school tomorrow. He was off Tuesday, Wednesday and Thursday. I could see Tuesday and I suppose Wednesday but by Thursday it was really ridiculous. His school goes by the Carmel school schedule, which is fine, but I wish they could be a little more flexible about it. Like, I suppose Carmel didn't have school all those days because the CHILDREN would have to STAND in the ICE at their BUS STOP and oh noes! we can't have that, which is fine by me. But Anthony doesn't take the bus, it just seemed ridiculous for them to miss all those days. I mean - this ice is not going to melt for the forseeable future, so it seems to me that these cities should make some sort of contingency plan. Anyway. He was home all week and he did very well, considering everything.

Imp

2011-02-02T14:59:00.000-05:00

Table

2011-02-02T14:58:00.000-05:00

Yes, he's standing on the table. He is going crazy, poor baby, without a schedule. He's been home for two days and last night Mike and I went up to him and changed his diaper and laid him down. I said, look, you can't go to school tomorrow, why not just go to bed soon and get a good night's rest?
And he did! He was asleep around 9:30 and slept until like 8:00 this morning. He is well-rested but sad, today, I'd say, which beats tired and sad, I guess.

Happy

2011-01-31T13:34:00.000-05:00

This is also off Mike's phone, you can tell Anthony likes him too. It's hard, because Anthony isn't always ... well, he's always affectionate but he's sometimes kind of disconnected from it, and sometimes with me, he is a downright user! Like he is hugging me but he is only in it for the skin-on-skin contact. But we know he loves us, so it's not an issue of that. I just hope that he is happier than he seems, sometimes. I wonder - I worry and worry about these tantrums, and when one will hit and I dread it and I wonder, does he worry about it too? Does it hit him out of nowhere or does it scare him? It freaks me out too much to think about it. So here's a happy go lucky picture of our happy boy. We'll just go with that.

Red Hat

2011-01-30T08:47:00.000-05:00

Ha, he's a red hat! Mike said he just put this on yesterday and was playing around while wearing it. He's so cute in it, right? He's so gorgeous, to me. The lady at the Y the other night kept saying, "he's so good looking!" and I think she was sincere. This poor baby, Mike was saying, his little baby teeth are getting ground down to nubs. They still look like teeth but they are smaller, it's so weird. I am hoping and praying he can move on from teeth grinding once he has his permanent teeth.

Well, it's Sunday. Laura babysat last night and although he had a rough start, she said he was asleep by 10:00, which made me cry with relief when I heard it. He was up around 8:00 this morning (three LONG hours after his sister Veronica was up) so hopefully he'll be able to get back on track. We are just going to keep plugging away here and trying to make things better. We're going to get an iPad with our tax money and we're going to get a dog, maybe, and we're just going to figure it out. Probably.

Beautiful Boy

2011-01-29T14:28:00.000-05:00

It's so hard - I took these pictures ten minutes ago and now he's in the dining room with Mike, so sad and upset. We had a hard week this week and even though we started swimming on Thursday, it ended up pretty rough. He doesn't go to sleep until so late, and so he's so tired by the end of the week. I am afraid he is getting sick, too, although it's hard to say because his ... well, it's like this: Mike and I were saying, we have stress go right to our stomach and so does Anthony's.

I had a loooong discussion with some people at his school this week and came away very distressed. I do think that they are doing great work with Anthony, but these tantrums are really getting in the way of Anthony's life and success. I mean, they are affecting us all, as a family, but especially him. I just don't think that we are speaking the same language. They recently switched his MWF morning therapist, who is the only therapist who has been with him from the beginning. So Mike and I were sad, because we really liked her and Anthony really liked her and she seemed to be doing very well handling his issues with the tantrums. But the thing is, he can't just work with the same therapist all the time, because the whole idea is that he's successful with everyone, everywhere. So we were fine with it, just sad, especially because of how it's been for us during the last ten months or so.

The problem came when I talked to the scheduling person at his school, and she said how they had to switch Pam off his case, they switch them every four months or so. I made the mistake of having ears and a brain and I said, well, he's been with her since last August, and that's a lot longer than four months and she said since Anthony had been having a hard time when they would have switched they decided not to. And I was like, well, mmm, that doesn't make sense because almost FOUR four month periods have gone by and Anthony is still having a hard time so why now? (And I'll tell you why, to save us all some time - because it was most convenient for THEM to switch her at this time.). And if the girl had just said that, I would have been FINE with all of it, but of course people are so full of b.s. that she had to go on and on about how they were doing THIS and THAT and the OTHER thing, and she got all circular and confused with what story she was trying to tell. In my opinion, this is why you should just be forthright and honest in the world. It will make your life a lot easier if you don't have to constantly try to remember what story you're telling. It also will make me not hate you and not want to deal with you anymore.

So anyways, then I get an update from the school that this therapist is moving to the new center and congratulations, and all this. And it's the therapist that replaced Anthony's long-time therapist for MWF mornings. The therapist who looked me in the eye a month ago and said how *excited* she was to work with Anthony and how *great* it was all going to be. She probably said this at the same time that she was filling out her application for her new job, which is something I just don't understand. I guess there is some incredibly fast career track at the school and they have to move therapists up, up, up, before they get bored and take their wares elsewhere. Or whatever. So I was mad and I called the scheduling girl, with whom I am no longer going to deal, because I am always thisclose to losing my mind anyway and I just can't drive myself crazier by dealing with the likes of her. Then I talked to the Executive Director and we got it all straightened out, I guess, but we were on the phone for over an hour, going round and round, both thinking we're right and - just - ugh. They think I'm some sort of crazy bitch, and they've been doing things all this time, I think, doing things just to keep me quiet and not because it's the right thing or because it will help Anthony. And I haven't been asking for crazy things - I've just been saying that THIS is the way Anthony's life is right now and we would appreciate some consistency. Then it turned out that the Director maybe didn't know anything about Anthony's tantrums and I know she doesn't have to but it's so strange, because it's such a giant part of our lives, really running our lives, and I feel like no one cares about helping us END them. It's beyond frustrating, it is downright depressing and it is the hardest thing I have ever done, and I assume Mike too, to just keep soldiering on and asking and begging for help and not being surprised or hurt when someone says, sorry, nope! We have nothing actual for you, but we will keep gathering data on it. And I think, gathering data? It seems like soaking dishes to me. Soaking dishes that do not need to be soaked, but you put them in the sink in water because you don't feel like doing the dishes right then. I know that this is not how it is, necessarily, but it's how it feels.

Anthony was so tired yesterday afternoon, he had a very, very hard time during his home therapy. But then he was up until 11:45, then Veronica was up at 12:30 until 2:00 and then Maria was up before 6:00. I do not know how we are supposed to do all this crap that we have to do to keep everyone safe and (relatively speaking) happy on this little sleep. I just don't know, it's terrifying.

Mike took them to get donuts today, and we all went to Costco, though, and that went fine. He is mad now and probably will stay rough through bedtime and then hopefully, if GOD IS A MERCIFUL GOD, he will just go to sleep kind of early tonight and get back on track. We'll see, though. I'm sure mine is not to reason why and there is some freaking reason that we are going through all this.

So. As is happening a lot lately, this is ending on kind of a bummer. But don't be bummed, think of Thursday night, when Anthony was so happy, in the pool! "Pool!", he said, when we got there. He kicked and tried to drink up all the water, and charmed his teacher and the Aquatics director at the Y. My sister Laura, who deserves a big shout out, came over and watched the girls in the time period where I had to leave to take Anthony to the Y and Mike was coming home from work. She is also babysitting tonight. Anyways, it's fun to do something with just one of all these kids, but for me, especially Anthony. He seems very aware and grateful that it's just us, like it used to be.

Liars

2011-01-25T14:10:00.000-05:00

Pictures are liars, he was on the edge of a giant meltdown here and look how cute he looks.

Sweet

2011-01-25T14:02:00.000-05:00

Aren't they sweet? I should say, don't they LOOK sweet? Because they are sweet but hoo boy it can also be kind of rough. It's so, so hard, especially on the weekends, with Anthony. I am so tired of being afraid of him and afraid of his tantrums. I of course am never actually afraid of him, but I'm afraid for him. I'm afraid he's going to wake up crying, I'm afraid he's going to have a big tantrum, I'm afraid he's going to get hurt or hurt the girls, I'm afraid it's always going to be like this.

That's the worst of it - I have to just take it one day at a time because otherwise I get NUTS, thinking, how will I control a giant 13 year old, taller than I am, who is flopping around and flailing out and punching me in the throat? We just have to keep trying stuff, keep getting in at him and finding out what ails him.

He is so cute and sweet, most of the time. This morning I went into him and he was sleepy and warm and happy, babbling away. It's so sweet and nice and also kind of ruined, because I can't just enjoy lying there with him, because I am constantly waiting for the other shoe to drop. Ha, to drop and to kick me in the face.

We start swimming on Thursday. I bought the cutest pair of swim trunks last night, so it should be fine, right?

Swimming

2011-01-18T18:03:00.000-05:00

Lately, I have been getting very annoyed that we just can't do anything when the weather is bad. All during break, we were inside allll day, and then on the weekends and this past Monday for MLK day, it's just been bugging me. So I called the Y this week and we are going to start Anthony in swimming lessons! Isn't that exciting? There is a program called WAVES that the Y has, it's for special needs kids and they start out one on one, which is thrilling. Anthony is used to one on one and I just don't think he'd thrive, right away anyway, in a class environment.

So on Thursdays, starting this week and going for six more weeks, we're going to go to swimming lessons. Amy told me that he really enjoyed his swimming outings this summer, so I am bullish about it. Of course, whenever I am bullish about something with regard to these kids, it ends up backfiring horribly, but I'm sick of being so jinxy and worried all the time. So of we'll go. Parents aren't *allowed* in the pool, which thrills me NO END, but it makes me all nerves too. I'll keep you posted!

I thought I talked about the Dog Thing

2011-01-16T14:59:00.000-05:00

... but I guess maybe I didn't? I'm not what you would call a dog person and I am definitely not what you'd call a person that wants to take on any more work. But a few months ago, a friend of mine wrote to me from Florida and she said that her neighbor's grandson had autism and that he had just gotten a dog. She said the kid used to be a real 'bolter' and that the dog had really curbed (ha! see what I did there?) the kids' bolting. She said that the family told her that it had changed their lives. Then I read a little bit about it on the internet and I kept seeing that phrase, that getting a therapy dog 'changed their lives'. I thought, hey! our lives need changing! Because our lives suck! Ha, not really, but you know what I mean.

So I started looking into it, I wrote about it on twitter and several people responded with information and I started to look into it. Then I went to a Christmas party at my friend Kathi's house and I was just talking about it and Kathi's cousin Evelyn said SHE was on the board of the Indiana Canine Assistance Network. She said the greatest things about it and she said that it was much cheaper through this program than any other. She kept saying it was a 'nominal fee'. So I read about it the next day and saw that there was, indeed, a nominal fee of $25 to apply and then it was a not-so-nominal fee of $950 to get the dog. I was shocked, as that seems like a lot of money, to me. THEN I looked at some national programs and found out that it was like $15,000 for a therapy dog through them and I thought hey! This is why $950 seems so nominal, it's *by comparison*. So. We had some trouble getting info at first, because I sent an email to get some information as to what exact kind of service dog we'd apply for, and of course I didn't hear from the person. I prefer to email, always, but lots of people want to talk on the damned phone. Since it's hard for me to talk on the phone, because of a whole host of reasons (our home phone sucks, our cell phones get bad reception in the house and in 90 percent of the city, AT&T sucks), I begrudgingly called this week and talked to a wonderful person who sent me the exact form we needed. So. We are on our way. I am saving my lunch money and we're going to do this, as long as it works out okay for Anthony. It's a very slow and gradual process, they want to be sure it's a good fit, as of course we do, so we'll just see.

Friday!

2011-01-14T13:02:00.000-05:00

We are about to have home therapy for the first time in several weeks, because of break and then Amy was sick. But she's better and break's over and hopefully we'll have some fun today.

My sister Laura babysat last night, which was a fun surprise. She came over after I got Anthony, to bring Maria her birthday present (an excellent Dora doll) and I mentioned I had to go to Target, so she said if Mike wanted to go she would stay at our house. So that was fun, we went to Target TOGETHER and we went out and Mike ate dinner and I drank wine and it was fun. Laura called while I was out and said Anthony was making a lot of noise and she went up and he was naked! So she got him dressed again, but she said she was calling to say he'd probably be naked when we got home. We got home about an hour later, because really? Who cares? It was about 11:15 or so and he was, in fact, naked, and lying down on the chair/bed I got him. It was hilarious, to see that sweet cute bottom sticking up on that Toy Story chair. We rolled him over to his bed, (I should say his mattress, he's been tearing them apart) and threw a diaper on him and covered him up and he stayed asleep. He was crying this morning around 6:30 but I think he had gotten out from under his blanket and he was cold. I laid down with him and sang to him and rubbed his back and he went back to sleep for a while. He's so tired anymore. Every morning we tell him, you wouldn't feel like this if you'd just get some rest at night, but he either doesn't understand or doesn't care.

I was telling a friend this morning, between this therapy dog and the iPad, Anthony is becoming an expensive person to have! These kids have been pretty cheap so far, though, so I'm not worried. They were mostly breastfed, they wear hand-me-downs, etc. I'm excited that something might help Anthony feel better. He had some WHOPPER tantrums yesterday and I find it very difficult to keep up with them. I am so hopeful that something will work - something has to work and I figure it's up to me, as his mother, to figure out what.

That stupid fake doctor in England who said that the MMR vaccine was responsible for bowel problems and autism was proven this week to be - not just a fake - but a fraudulent, money grubbing bastard. I feel bad for people who believed him and based their whole view of autism on this one fact. It is incredibly hard to not know what made your child have autism, the medical community DOESN'T do very much but ... I think that's because it's not really a medical condition. That sucks but that's the truth of it. It's a communication disorder, a delay, and we have to treat it as such. I can't treat Anthony's autism with medicine, because it's not a medical problem. He doesn't sleep well but I can't medicate him, I can't drug him, because he is just a little boy. I mean, he could probably stand to relax a little bit but I'm not going to give him a glass of wine or something!

Today is Delurking Day in Blogdom, where if you are a LURKER, that is, someone who reads this blog but never posts, you should make a comment. I've relaxed the rules on the blog so that anyone can comment, so please, feel free to leave one. I have a site meter on the blog and I know many people look at it every day, so let's hear it!

iPad

2011-01-12T20:29:00.000-05:00

So we are going to get Anthony an iPad. I have heard a lot about how great iPads are for kids with autism, but I figured Anthony was too young. Then my friend Susannah told me about a friend of hers, whose daughter is like TWO, and she has one. I read this woman's blog about her daughter, Maya, and specifically about the iPad. I got so excited when I saw the video that she made, and I thought we could do it too! What the hell? Why not? Anthony is almost six, so maybe he's not too young!

I talked to two of Anthony's therapists about it and they seemed really excited and on board, which is wonderful. I have been advised to wait until April, because of how it all works at Apple, and so I think we are going to take some tax return money and get Anthony an iPad. !!! I'm going to check out some of the apps on my phone and hopefully learn some about it before we start. When I think of the possibilities - that maybe Anthony could start communicating better and in a way that makes him happier - I want to plop down on the floor and cry.

With Mike

2011-01-10T22:37:00.000-05:00

He climbed right up in Mike's lap, to eat his peaches that way. SUPER cute.

Counter

2011-01-10T17:52:00.000-05:00

He has been going crazy with hunger when we get home. I asked his therapists if they could maybe give him a snack a little later in the day because it's bonky bonk, trying to endlessly feed him and deal with the girls, and get dinner together. He opens that damned corner roundabout cabinet and climbs up to get at the food, but then it's stuff he needs help with. He loves peaches, raisins, goldfish, frosted wheat cereal, and saltines. He ate all of those, times one million, this afternoon. He had a good day today even though he didn't have either of his regular therapists. Everyone is sick, there is definitely something going around. I will give my right arm in sacrifice if he doesn't get it.

I'm So Glad You Found Me In Here

2011-01-08T10:09:00.000-05:00

I'm reading this book and it's incredible. It's incredible how much it makes me cry, honestly. It's written by a mother and son and the son has autism. He's 28 and just graduated from college, he doesn't speak but he uses a communication device, which is basically typing.

It's killing me - the first thing he typed, after his name (he was 11 years old at the time) was "I love you", to his mother. And I thought - let's get Anthony a typewriter! Ha! Seriously, it thrills me to think that Anthony loves me. I mean, I know he loves me, but I have to say, it would be nice to hear it or see it written down. Maria says "I love you too, Mommy" a lot and it goes a long way!

It makes me so hopeful and has really renewed my faith at this VERY annoying and difficult time in our lives. Anthony can do anything. It's true - how it is now is not how it's going to be. Now matter how bad it FEELS.