Wednesday, December 28, 2011

There are Crappy Parts, too. LOTS of them.

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

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

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

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

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

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

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

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

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

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

10. TEN! I made it! I constantly and I mean CONSTANTLY worry that I am not trying hard enough with Anthony. Because the thing is, no matter how hard I try, in some ways, it's not enough. It takes a team of us to help Anthony in all the ways that he needs to be treated. I am not a speech therapist, I am not an occupational therapist, I'm not even a teacher! So it's hard for me to know that I'm doing everything I can for him. I always thought of myself as a person who could fix anything. It used to be my b.s. answer at interviews about what was my weakness. I'd answer, honestly, that I had a hard time letting things go until they were fixed. I am the kind of person who truly enjoys doing ironing, polishing silverware. I love when things are a big mess and then I can just DO SOMETHING and they can be fixed, better. As Carrie Fisher says, I believe instant gratification takes tooooo long. So it's crappy that I have to wait so long to see such minute progress. But it is teaching me patience, I guess, and what else can I do? This is our situation. You can't pick your baby, my mom used to tell me, and she's right. If I COULD pick an Anthony, I'd pick the one I have anyways.
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Thursday, December 22, 2011

Joy Joy Joy Joy Down in my Heart

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

So.  Drumroll, please.

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

Tuesday, December 06, 2011


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?


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.  :)


Sunday, December 04, 2011


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'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, December 01, 2011


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.
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Thursday, November 24, 2011

He Loves a Parade

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

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

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

Um, but this was about gratitude, right?

I am grateful for my family, and Anthony's family, for being so loving and supportive of Anthony. I'm grateful that Anthony is ours, we couldn't love him more. Happy Thanksgiving!
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Saturday, November 12, 2011


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

Friday, November 04, 2011


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.
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Tuesday, November 01, 2011

Autistics Speaking Day

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

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

Wednesday, October 26, 2011


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.

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Friday, October 21, 2011


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!

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Monday, October 17, 2011

Anthony and the Girls

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

Saturday, October 08, 2011


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!

Monday, October 03, 2011


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.

Sunday, October 02, 2011


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.
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Saturday, September 24, 2011


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.

Tuesday, September 20, 2011


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. :)
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Saturday, September 17, 2011

Slow Learner

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 !

Monday, September 12, 2011


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!  

Monday, September 05, 2011

Recover from Autism

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.  :)

Monday, August 29, 2011

Toe Walking

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.  

Wednesday, August 24, 2011

This Week

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?

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Monday, August 15, 2011

Where Did My Baby Go?

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?

Sunday, August 14, 2011


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

Saturday, August 13, 2011

Beautiful Boy

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.

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Wednesday, August 10, 2011

Day ... 9? 10?

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, August 07, 2011


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!

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Thursday, August 04, 2011

Long Week

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!

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Sunday, July 31, 2011

Big Day

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, July 26, 2011


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.

Thursday, July 21, 2011


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.

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Saturday, July 16, 2011

Favorite Thing

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!

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