Saturday, September 24, 2011


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

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

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

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

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

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

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

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

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

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

Tuesday, September 20, 2011


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

What else. He had a great day at school today, mostly. He was tested on several targets, and, um, broke through them? Or something? He did well. Mike went to a meeting there this week to talk about his teeth grinding and we are going to continue to work on that. He is doing very well with the iPad, that thing - it's like it was made for kids with autism, so weird. It's probably because so many computer programmers are on the spectrum. When I look back at all the people I worked with when I worked in IT, and how *on the spectrum* those dudes were, it blows my mind. Anyways.
It's crazy to me that it's more than six years ago that I had Anthony and now we are going to have our fourth baby. I keep telling him, we're bringing another baby home, just like Maria and Veronica! He just cuts his eyes at me. I am going to get him signed up for more swimming this week, I am hopeful he can get back into it and it will make him happy. Winter is coming and typically that's hard for him but I hope we can replace it with enough fun stuff that he'll be okay. In the meantime, we're a lot further along right now than we were two months ago, so I'm hopeful that we're on our way. On our way somewhere. :)
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Saturday, September 17, 2011

Slow Learner

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

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

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

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

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

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

Monday, September 12, 2011


Warning:  we are going to talk about poop again.  

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

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

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

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

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

Monday, September 05, 2011

Recover from Autism

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

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

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

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

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

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

Editorial Reviews

From Publishers Weekly

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

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

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

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

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

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

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