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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