Haircut

Well this is a big deal, right?  That was a lot of hair we cut off of him yesterday.  Mike and I have been noticing that his hair is kind of tangly again and it's been super hot here so we decided we'd cut it in May and then yesterday morning we just decided to go ahead and do it.  We sat him in Veronica's chair and put the cape on him, he was fine but whiny, tense.  I cut it with scissors and then we used the clippers and then when we were finished he FLIPPED OUT but then he got in the bath and then he seemed better.  I hate to upset him but I think ultimately it will make him feel better.  It's so hard to tell.

He has been doing well at school and not so well at home.  He is unhappier than I would like him to be.  He is also bolting a lot lately.  I think it's a combination of his age and the weather.  I think instinct wise, everyone is a little nuts when the weather gets like this IN MARCH.  The girls are kind of crazy, too.  I mean, it was 81 today and is going to be 83 tomorrow!  Sunday in church he ran away from us, not once but twice and the second time, I thought for sure he was going to run right up on that altar.  I could see him in my mind, breaking some hundred year old statue, sheesh, I was DYING.  Also, to add to the hilarity, I had the baby in the carrier on my chest, but we were both SOAKED because I brought this stupid dud bottle that leaked all over both of us.  She was pressed up against me but I needed her to cover me because I had kind of a wet tshirt situation going on IN CHURCH.  Ay yi yi!  It was crazytown, indeed.

We went to the park on Saturday and we ran into an old therapist of his.  I am friends with her on Facebook, she is super nice and has two little kids herself.  Anyway, she was saying that Anthony was always special to her and he reminded her of Peter Pan, which I thought was so sweet.  I don't think this about all my kids but I do feel like Anthony has a very special way about him, outside of everything else, where you just want to love him.  Ha ha, when he is crawling all over the countertops and knocking stuff down and breaking glasses, I think to myself that he may be difficult to LIKE or to LIVE WITH or to keep a CLEAN HOUSE with, but he is so, so easy to love.  It feels like breathing, to me, loving Anthony.  Anyways.  That's our update on Anthony.

Oh!  I forgot!  He has been driving us mad, MAD, I tell you, with this taking off his pajamas.  We have had a few incidents wherein Mike and I are doing major, MAJOR clean up of his room in the night, and it stinks.  The duct tape that we put around his pajamas just wasn't working anymore and it was super frustrating.  So I googled 'autism, removing pajamas, help' or something and I found these.  They are PERFECT and they weren't expensive at all.  We bought three pair and we might get more.  He is going crazy taking off his clothes on the weekend and when I go to work it's very hard on Mike.  This is funny, actually.  We have a giant window in our living room that looks right out on the street.  I used to have a bassinet filled with stuffed animals right in front of the window and a few times before I moved it up to the baby's room, Anthony has thrown those animals out and gotten in with NO CLOTHES and one time he POOPED in it!  I know it's gross but it's kind of funny because I'm all, Anthony, really?  We have to do it in FRONT OF THE GIANT WINDOW?  Sheesh.

Anyways, the pajamas are working out really well.  The are such a nice light material, I'm much happier with them for summer than the fleece ones anyway and they are snug to his ankles but don't have feet, which I think he prefers.

He has some more outings coming up at school which I'm sure he'll love.  I am signing him up for camp again this week, it will be in July and just one week.  We are moving forward, which is all that matters, I suppose.

Sick

Anthony is sick, and he can't go to the circus today, which was the scheduled field trip at school.  That is the bad news.  The good news is that he is by FAR the healthiest of all four, well, maybe it's a tie between him and Felicity, but he has only thrown up once, yesterday, and nothing since.  Now his sickness is taking the form of sleeping in this morning and being incredibly noisy and fretful about being home from school.

There's a woman who I read on the internet who has twins who are nine months old and one is in the hospital, with RSV and has to have oxygen and she is nursing both, it sounds so horrible and impossible.  I am trying to think of her this week and think of how even though all the kids are sick, they are all here and not in the hospital. I am tired but I'm not as tired as I could be.  We have, overall, been lucky this cold and flu season, but still.  It's a pain!  And he doesn't care about going to the circus, I don't think, but I'm still sad about it.

WOW

I am a terrible updater.  Mike is out at the store and getting dinner, so I am going to try to update all the blogs tonight.  I feel kind of ridiculous sometimes, doing these blogs, because people so rarely comment and I feel I am typing into a VOID sometimes.  Then I think of it as a journal, but it's not really, so anyway, LONG TIME, SORRY!

Anthony is doing just fine.  He is really back on track with the potty training at school and despite the fact that he didn't have a great day today, he is doing well at home too.  He is still kind of tantrumy, kind of sad and whiny, more than we would like but what can you do?  He has been doing great at school and got to work some with Pam, his first therapist, this week, which is always a treat.

He's been swimming on Thursdays, we're signing up again, as he really likes it.  Sometimes he really swims away too and I think his teacher is a no-guff type person, which is always best for him.  It's an adapted swimming program, and it's great that the Y has it but I sometimes wish the teachers knew a little more about autism.  They are forever SHOWING him how to do things and expecting him to mimic them, but of course, Anthony can't learn that way.  So then I have to tell them and then I feel like I am overstepping my boundaries, etc.  But I do it anyway.  It reminds me of when my nephew Parker was little (he is going to be TWENTY this week, aahhhhh!), I asked him how he liked summer day camp and he said it was fine.  I said, do you like all the people, the kids? and he said he liked everyone except this one girl, he said she was a real KNOW IT ALL.  I said, well what does she do and he said, she's the swim teacher, ha!  I said, well, she does know it all, then!

What else.  He was in a bad sleeping cycle for a while but he always works his way out of it.  His legs are getting super tight again from him walking on his toes.  I hate to do it but we might have to put him in braces, ugh.  I am going to try to avoid it, but I can't not do it just because it bugs me.  Things are fine, we are working away, as usual.

I had a thought last week, though.  I have this friend Marta and she has this husband, Davide.  They are from Italy and she is a great friend to me.  They have three kids and we recently had lunch with their family, out at Pat's, where I work.  It was fun and Anthony sat in between Marta and Davide.  Davide is really nice to Anthony, they both are, they just treat him like everyone else and they say HI and ... I don't know, they just treat him in a normal way, which I appreciate.  So Anthony sat in between them and ate his lunch and sort of leaned on Davide, like he does and I could tell he liked them.  Davide said something later about how nice Anthony was, how sweet he was, and I thought, he IS!  He really is sweet!  I told Mike later, I get so hung up in the future of things, so worried about Anthony getting bigger, and kicking my ass, and maybe KILLING ME, like I read about in stories, that I don't ever even look at him.  I can't even see the sweet thing that he is because I'm afraid he might get older and kill me!  Isn't that crazy?  That is what it's liked to be ruled by fear and not by love and I am working on it but I'm grateful to have friends and Anthony's therapists to remind me of how great and cute and sweet he is.  We're all really lucky, even if I can't feel it all the time.

Dog Show

Just a quick note to say that Anthony went on a field trip to a dog show.  A DOG show!  We were nervous but he did great, his therapist said.  She said that he even went over on his own to pet a dog, which, come ON!  I said it on Facebook and it's true, you never know anything with these weirdos.  I'm so proud of him, and so happy that he enjoys these outings so much.

Outings

What's Anthony been up to?, you might be wondering.  Ha, not much.  He went to see his developmental pediatrician last week, Mike took him.  He has to go every six months to get his prescription renewed for ABA therapy.  It's SO ridiculous.  The doctor seems very nice and smart but honestly, he has nothing to tell us that we don't already know.  If Anthony isn't sleeping well, he can prescribe sleeping pills.  If Anthony is tense, he can put him on anti-anxiety medication.  That's it!  All he can do is prescribe medicine!  He's nice, as I said, and he seems .. impressed that we are - I don't know, even working with Anthony.  Like, what else would we do?  He's six years old!  I still have some hope for the old boy, sheesh!

He makes you wait forever, this doctor, and it's so crappy because we are only there to get our letter from him.  BUT like Mike says, it's just twice a year, big deal.  It's a small price to pay in order to have his therapy covered.

He is going to go on some outings at school.  He's going to see The Lorax movie and also he is going to a Dog Show, ha ha.  This is funny because Anthony is scared to death of dogs but as I told Mike, it's not like they're going to throw him in the ring with them, he's just going to look at them.  I imagine if he doesn't like it, they'll take him out.  I'm so glad he goes on outings at school, I don't really even care where he goes, as long as he's out in the world.

Speaking of the world, we went to Mass at our church for the second week in a row and it went okay.  It didn't go as well this week as it did last week but what can you do?  It's a Children's Mass and we sit in the back, in fact this week in the last row, so that we can get out if we need to.  We get their early so that people can consciously make the decision to sit near us and when they do, if they feel the need to give us a dirty look, I can just shrug my shoulders, like, "sorry, Charlie, you decided to SIT NEAR US!".  This week a single lady and a couple sat in front of us and they both seemed a little - not mad but they seemed like tightasses, kind of.  And to them I say, a) don't come to a Children's Mass, which is full of CHILDREN and b) don't sit in the back, dummies!  Get up front with the old people!  But it went well, we are joining this parish and the girls will go to school there.  How I wish there were something for Anthony there, but there's not.

Lastly, the sad news is that Anthony's great grandmother, Mike's grandmother Pat, died last week.  She was an extremely good grandmother to Mike and she was a super nice person to me.  I remember shortly after Anthony was diagnosed, we went to her house and Anthony had wandered into her bedroom, so we went in after him.  He was saying the alphabet, which I was signing, and he was so great at it.  She said to me, Oh Joanne!  Look at smart he is!  He's going to be fine!, and I have never forgotten it, I think about it all the time, I think about her saying that and I think that's true!  He is smart and he will be fine.  She and I had a great correspondence by mail and I will really miss getting letters from her.  We didn't see nearly enough of her in the last couple years because everyone hates the car so much, but I'm glad that we exchanged letters, she was always incredibly supportive of me and all these kids and I loved her for it.  We'll miss her.

Rare Sighting

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

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

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

Long Time

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

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

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

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

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

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

Video

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

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

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

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

Clown Bike

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

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

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

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


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

First Thanksgiving

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

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

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

There are Crappy Parts, too. LOTS of them.

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

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

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

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

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

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

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

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

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

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

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

Joy Joy Joy Joy Down in my Heart

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

So.  Drumroll, please.

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

1501

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

Dear Pen Pal,

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

Ha!

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

1501!

Sunday

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

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

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

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

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

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

Thursday

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

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

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

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

He Loves a Parade

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

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

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

Um, but this was about gratitude, right?

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

Saturday

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

Flying

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

Autistics Speaking Day

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

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

Mike

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

Three

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

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

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

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

Anthony and the Girls

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

Siblings

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

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

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

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

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

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

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

Yikes

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

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

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

outside/pantsless/hanger

These are a few of his favorite things, ha!

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

TV

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

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

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

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

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

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

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?