Friday, October 29, 2010

How Do I Deal With Stress?

This is part of a blog hop about what I do, as a parent of a child with autism, about stress

I guess there is a lot of stress involved with raising a child with autism, but I tend to focus on the stress that occurs when one's two and one year old daughter crawl up one's butt every damned day of her damned life, so I can't even think of what stress Anthony causes me.  

I know that it is a near constant worry, that we have about Anthony.  I think about him all day while he is at school.  I worry more now than I used to, because of the tantrums that he has now.  Sometimes I go get him at school and his eyes are so red and I know that he was just crying hard and it kills me.  I hate that he is at school, being upset and maybe wondering where I am, and I'm not there.  I'm down here, miles and miles away, trying to pry Maria or Veronica off my leg.  Logically, I know that he's fine, but since he started having these tantrums, I can hear him crying in my head, even when he's not.  

In the mornings, Mike goes in to get him and he always says "Hi, Buddy!", so cheery and happy and I wait, poised and tense, to see how Anthony will react.  Often, he is upset in the morning.  Often, he'll cry and yell and Maria will say to me, "Anthony doesn't feel good, Mommy?", and I'll say, "No.  No, he doesn't".  

Lately in the paper we've been reading - well, Mike reads it and tells me - about some sad autism stories.  A five year old was saved from drowning in a retention pond, after he left his apartment while his mom was lying down (I think to myself, NEVER LIE DOWN).  Parents of adult children with autism are told to leave them at homeless shelters, if they can't take care of them.  This is in Indiana, which is AWESOME, right?  It puts a whole different light on commercials when the Governor talks about how we are in such great shape, financially.  

Soooo, I guess I'm saying yes, there is stress.  How do I handle it?  I pray daily and almost hourly.  I pray for Anthony, I pray for a miracle, that he can handle his life in the world.  I pray for strength, and I pray for Mike and me.  Please note, this does not always work.  Sometimes, I get so mad and I think, how could God want my little boy to be screaming and crying like this?  What does this mean?  Why should Anthony be punished like this?  But that's only sometimes.  I know that mine is not to reason why, I know that I can just do the best I can by Anthony and that's that.  He'll have to live with us forever, he may never get a job, he'll never be toilet trained - these are things I worry about, but really, they could all be true of the two girls, too.  They're not *probable*, but it could happen.  Anything could happen to anyone's children, it's just that Mike and I know a little bit more about Anthony's future than we do about Maria and Veronica's.  I'm always saying I want to know the future, so maybe this is the way that I do?  

I do try to go out, I probably go out too much.  I like to go out and talk to other people, I like to go out with Mike.  The reason it seems like it's too much is because whenever we go out, it seems, the children know and punish us by waking up early.  Last night, we went out and were home before 11:00, I watched a little bit of a movie and fell asleep by 11:30, and then at 3:45, Veronica woke up and was up until almost 6:00.  So, it's fun to go out but it's never fun to be so tired, so that actually ends up adding to the stress and not alleviating it.  

I read, we watch a lot of escapist television, I try and work out.  I eat ice cream.  Honestly, we just plug away and try to plan a lot and not think too much.  We have put a lot of thought and work into what we are doing with Anthony right now, but we have to have faith that we have made the right decision and let it go, a little bit.  I love his therapists and I know they treat him like he's one of their own, and that's all I can ask.  I also try to not look for fights (believe it or not).  I can't look for offense in every single thing.  For example, right now there is this quiz going around Facebook about "Your Autism Quotient" and a lot of my friends have taken it.  They have taken a test to see how autistic they are.  It makes me mad, kind of, because I think if you are taking an adorable quiz about it, perhaps you don't have to worry that you have AUTISM.  But I am not going to be mad about it, I'm not going to look for things that separate me from my friends who have only typical children.  I'm going to look for things that make us the same.  We are all parents.  We have more similarities than differences.  

He's a beautiful, lovely boy.  He never screams at me or gets mad at me.  He works so hard.  He tries all the time.  Why should I be stressed out about that?  He is just who he's supposed to be, right now, and I get to be his mother.  Sometimes I can make him feel better when he feels just *awful*.  I always try and remember that, that I am here to help him, and that I have been given the ability to help him.  I don't always succeed, as I said, sometimes I get really mad.  But if I'm honest, I am mostly always mad at Maria.  Ha!  

Sunday, October 24, 2010

Hoo Boy

Isn't he so gorgeous? I am always snapping away, saying 'Anthony! Anthony!' and he largely ignores me and then sometimes, like in this picture, he looks right at me. I wonder, does he wonder why I am taking pictures and crying? What does he think of me? He probably thinks I'm a NUT, and he is probably RIGHT. But it's just such a gift, out of nowhere, when he looks right at me.
He is having a good weekend, even though he had a horrible, HORRIBLE morning yesterday. Ooh wee, did he have a meltdown, and it is getting harder and harder to MOVE him during it. If he is in the basement, though, I like to move him to the carpet, because he really flops himself around and I'm scared of him hurting his head.

Friday I and the girls met Amy and Anthony at the park and it was ROUGH. I am not proud of my behavior, because I was very tense after a long-ass ride to the park, and then Anthony was mid-meltdown when I got there. I feel like I should be SMARTER and more ON TOP OF THINGS with regard to Anthony and I'm always so mad when I'm not. I think we should have been keeping the HOME in home therapy and we have been going out too much. I think it's overwhelming for Anthony. So anyways, I was mad and grumpy and even though I told Amy I was sorry, I want to say it publicly too - I was a big jerk and I shouldn't have been anything but nice to you, Amy, since you are nothing but nice to us. So. Anyways.

We are looking at houses and making bids and counter offers and I will be glad when this whole part of the process is done. It makes me sort of hate the people that we're dealing with and I don't even know them! But like - people are SUCH JERKS. When the people that bought our house made their offer, we counterered right away and then we just sort of kept it moving. We are supposed to hear by 6:00 tonight from this couple whose house we are trying to buy and they probably won't have an answer til this afternoon, and it will probably be no. So ... why make someone wait? Why make us waste a Sunday afternoon where we could go look at our second choice house? Just to be mean, is why. So I hate them. SO it's probably best that we move through this process as quickly as possible. Last night in church there was the Gospel about the Pharisee ,who goes to pray and says, basically, 'thank you, God, that I am so much better than the rest of humanity'. And I read it at first and I thought, 'do I know how that feels!', and then, of course, the point is that that actually DOESN'T make you better, to think that you are better than everyone else. So. I am a work in progress, and I would like to be away from situations where I judge others. Ha!

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Wednesday, October 20, 2010's cold in here!

I have been thinking about the term 'refrigerator mother' lately. I know that I was never cold or ... absent from Anthony or whatever, when he was a baby, or really ever. He was breastfed, I never put him down, hardly! I did and do love him so much I feel like my heart will break sometimes. I don't worry or feel guilty that I made Anthony have autism. BUT. Lately I think I can see why a person would look at a mother like me and think that I'm cold. Anthony has been having these meltdowns for about seven months now, almost every day, sometimes worse than others, but on the average, pretty bad. His OT said this week that he had a meltdown and she did some exercises with him to ease his 'tummy pain'. I asked her, did he have pain? She wrote back to me and said that she thought he had "pain" (her quotes) that was maybe caused by constipation, maybe not, maybe gas? I am just - what the hell? Not to get too far into Anthony's personal private digestive system but he has never been constipated and I've also never known him to have gas.

So I have to start, all over again, with another professional and say YES we took him to the doctor and NO they do not think he has any stomach problems. It is exhausting and annoying and also it makes us worry that maybe there is something wrong? But I am not going to fall prey to that kind of thinking. I feel like when he was a baby, like everyone says it's ME and what I'm FEEDING him and then I say, hey wait! How can you fix his stomach by running the blow dryer? And then everyone is quiet.

So. Tonight Anthony had a terrible, terrible meltdown, out of nowhere, same as usual. He was really crying and I said to Mike, just let him go. I said I can't do it one more time and I have to do the dishes anyway. So I did the dishes while Mike stayed with Anthony downstairs, he was screaming and crying bloody murder the whole time, maybe 15 minutes. And I was thinking, I have to be a little bit cold about it. I have to sometimes just want it to start, so it will end. It scares the girls and it scares Mike and me, and I'm SURE it scares Anthony. But if I wasn't a little bit hard to it, a little bit cold about it, I would just go around crying all the time and who the hell would that help? You have to steel yourself a little bit and if it comes off as cold or whatever, I think that's too bad. I think of those poor women who a DOCTOR told, 'this is your fault'. I can't even imagine. It's already hard enough, we're already so nervous all the time, we never know how he is going to wake up, how much he is going to scream, if he is going to flop his body on the hardwood floor, will he flail and hit the girls, etc., etc.

Um..I'm trying to think how to end this on a positive note. It really is positive, sometimes. Often! Lots of people have made donations to Little Star, for which I am very grateful. Anthony is doing very well there, even when he has meltdowns there, he still gets his work done, he is blasting through his goals, and we still love his therapists. We are doing home therapy and we have been going to the park, the museum, the zoo, etc. Things are good, except for when they're not. Which is, I guess, always the way.
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Sunday, October 10, 2010


See how he's not looking at her, but he's putting his hand out to stop her from smashing that walker on his hand? He rarely looks at what he's doing. When he does stuff at school that requires him to match something, it seems like he's not looking at it, but then he must be, because he puts the thing where it's supposed to go. It's weird, but not uncommon.

I am still asking for support for Anthony's school. If you haven't yet, please make a pledge. I'm going to keep asking through October 22!
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Friday, October 08, 2010


I am still asking for money for Anthony's school, but I want to make a post about his week, so I'm just going to leave the link here. It has been a busy week and in fact, I am typing this around Veronica, who is sitting in front of the monitor, just so I can get it done. I suppose I should find it flattering but mostly I find it annoying. ANYWAY. Anthony's week, you ask? It's been pretty good. It started out not so great, he had a lot of tantrums early in the week, and BAD ones, long lasting and vile. He gets very upset and there is no real reason why. I read in a Temple Grandin book where she said that if a child is having a tantrum and there is no reason for it, that is, they are not trying to get out of something, then there is probably a sensory problem at play. SO. We are working on it. He missed OT at school for two weeks because his OT was sick and he is going to miss next week with his OT at his public school, so I'm glad we're doubling up!

We have been fighting with his insurance company. They are so terrible, it is disgusting what they will try to get away with. I guess there are some people who only pretend to go to speech therapy and I guess there are some speech therapists who only pretend to give people speech therapy. Since insurance companies treat everyone like they are the lowest scum on the earth, they treat us like we are trying to GET AWAY with something by sending Anthony to speech therapy. After 10 months, they decided they needed to see "progress notes" on Anthony's therapy, to see if he's, duh, making progress. If he's not?, I asked them, what happens then? I ended up speaking to this woman who was a HUGE help to me, but she is still kind of the devil because she works for Anthem BCBS. Anyway, she told me if the medical review team thought he wasn't making progess, they would want to stop paying on it. But I could always appeal, she said! In writing! We aren't there yet, where they are refusing to pay, but it's nice to know if we get there, I just have to write one million letters, which I totally have time for.

We are hoping to just get the notes and get them sent in and get the claims paid. Anthony is with a whole nother speech therapist now, anyway, and the billing will be done through his school so Mike and I won't have to get involved so much. I'll tell you what, though, I would not work for the insurance industry in a million years. What a bunch of soul-less scumbags they are.

SO! Back to Anthony! Last Friday we played at the park and we had a great time, this Friday, Amy is coming here. I'm glad that at least the house is clean, because we had that showing yesterday. :) Maria waits all week to see Amy, every child I have loves her to death. I am hoping that we can go to the orchard this weekend, it's supposed to be really nice. We wanted to go last week but it was cold and rainy on Saturday. It's supposed to be like 80 this weekend, so I think we'll be okay. I want to remember this weather in two months when we are all freezing!
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