Tuesday, March 26, 2013

I'll Give You an Ordinary Day

I watched this video, shared by millions of my Facebook friends, or it seemed like a million anyway.  I watched it and it is very moving, I think.  I was afraid she was going to say something happened to her sons.  But no, I mean, thank GOD, no, but it's just a book for sale.  She has just realized, since her sons have gotten older and moved out, that, um, those ordinary moments every day were super great?  Or something?  I think this is COMPLETE and UTTER BS, of course.  I mean, I think that about Maria and Veronica and Felicity, they are all so wearing on me and I just can't imagine that I will someday be, like, smoking a pipe or something and being all wise and stroking my beard and saying "ah, I really should have appreciated that day that Felicity cried for 45 minutes before she went to bed, I just didn't realize she'd move out someday!  If I only knew, how I would have loved that clingy jerkstore!".

I don't get it.  I feel like I failed some class in Mothering School or maybe I'm just not a senior yet?  Maybe it's not until you're a Senior at Motherhood High that you really miss the day you got your ass kicked, or the day after day after DAY that you got your ass kicked as a freshman?  Maybe then you think, ahhh that WAS awesome!  It's awesome to be bullied by jerks!  I wish I knew it then!

But that is just something that I don't get.  Possibly I will turn into one of those people, weeping into my - well, for me it will be weeping into my government cheese, because I will be OLD as the HILLS by the time everyone goes off to college and surely I won't be able to wipe my teary eyes with my social security check, right?  Because that will be gone?  Anyways.

Anyways, that is not my point.  I will always be a person who is allergic to bullshit and so I won't be able to be like, those dirty diapers really were the greatest!  Fine!  Whatever!

The reason that I hate videos like this, and why I hate people who are all - "Moms, watch this, and get a tissue!", is because they are not talking to me.  Not about Anthony, anyway.  Tonight while I was cleaning poop up off the floor, I was thinking about this video and thinking how the mom in it never mentioned cleaning up her almost eight year old's poop off the floor.  By eight, she is talking about baseball games and piano recitals, about football practices and playground scuffles.  We don't have that with Anthony, and we won't have them, not at eight anyway.  Not at nine or ten either, maybe.  We will never have them in any typical way.  And I don't care!  I don't, I love Anthony, however he is and he is my only  boy and this is how I think of Life with Boys, I think of it as Life with My Boy, I don't know any different.  But I'll tell you something and that is this:  you don't see me posting videos saying how you won't miss these times.  How HAPPY you'll be if your son ever stops pooping on the floor.  How you'll miss him ruining every shirt you have because he pulls you around the collar so hard.  I wouldn't say that because THAT IS RIDICULOUS!

I am a mother of a special needs child and I am also the mother of three neuro-typical children and I am messed up about it.  Sometimes I see videos like this and I think, oh good!  I love a good weeper!  And I settle in and then I am crying but NOT in a moved and sweet way but in a oh, damnit, they are not talking to me kind of way.  There is a club of Regular Mothers and I am not one of them.  I am not in the club.  I am SORT of in the club but not exactly.

My neighbor has four kids, like me, and we were talking the other day about having four kids and always having a baby.  She said that a lot of her friends had two kids, only two, and that they were the age of her oldest two kids.  So often, she said, she was the only one with a baby and boy oh boy do I know that feeling.  You feel like everyone is moving on and getting their tummy tucks and having their family "be complete" and there you are, rocking a baby, or chasing a toddler, or whatever.  It feels awful and you feel left out but at least THAT is only temporary.  I am the old mother of a little baby and I am the mother of a special needs child and I am also the mother of Maria and Veronica in the middle.

I love being their mother, I am proud and happy to be their mother.  I also think mostly every day sucks, especially during spring break and especially at the end of a long-ass winter, but no matter what I am proud and happy and lucky to be their mother.  But these videos, and people's insistence to Carpe the freaking Diem all the time, are driving me mad.

Thursday, March 21, 2013

New Estimates about Autism

This article has been all over the place today.  It's so stupid - the CDC calls parents and asks them if their child has autism.  Maybe they ask if their daughter or son, probably SON, more BOYS have it than GIRLS, dontcha know, is quirky, has communication issues, etc., etc., and they ... say yes?  They say, yes!, my son DOES have autism, that weirdo!  It's autism!  I mean, sometimes I think Maria is a sociopath, in that she just blasts through her life and mine without any regard for the effect she has on others, but I wouldn't tell the CDC that if they called!  By the way, they haven't called.  If they did call me, I'd say that Anthony has autism, debilitating autism which means that he can't go to a regular school, he can't be left alone or he might run into the street.  I'd say that Maria can be mean but is charming, Veronica sometimes goes through periods where she is obsessive about getting her air out, and Felicity is bossy but - and this is the key - Anthony is the only one who has autism.  We took him to a psychiatrist and SHE said he had autism, then we went to a developmental pediatrician for a second opinion, and he said, and I quote, "I have no doubt that he has autism".  We don't have any doubts now, either.

Denis Leary wrote about autism in a chapter of his book called "Autism Shmautism".  He talks about how kids with autism have inattentive parents who want an explanation of why their kids is a dumbass so they just SAY they have autism.  I have read the excerpt many times and it always hurts my feelings, which is so dumb, because he is not talking about me.  I mean, I don't think Anthony has autism so that I can make excuses for him!  Why would I want to make excuses for him?  Almost every day when I pick him up from school, his therapist says some variation of "he is so smart!".  He is!  Why would I make excuses for that?

Anyway.  As usual, I am railing on about nothing.  It just bothers me a lot that the CDC is putting out these numbers that just only may or may not be true.  Not to drop names, but when Mike and I saw Temple Grandin speak she said that she didn't know why Anthony's kind of autism was on the rise, but she felt like the reason that Asperger's or mild autism was on the rise was because no one makes their kids DO anything anymore.  She said her mother forced her to say PLEASE and THANK YOU and look at people, and behave herself, even thought it was really hard for her.  I don't know.  They talk about sending Anthony to a public school, even for 10 hours a week and I am struck with fear.  I don't know if he could do it, it doesn't seem like he could.  But maybe I am holding him back?  I dont' know.

We got an email about this art class that is offered for people of all special needs and I wrote to ask if I thought it seemed reasonable for him to take such a class.  Two different people wrote back and said sure!, it will be great! and such and such and it doesn't really sound like it.  The second email said that - well, here's a quote:

 It sounds like your son would be just right for our Saturday art class.  Our classes are adapted to meet the individual needs of students who have a wide range of  disabilities.  This 90-minute class will have a 45 minute session of clay and a 45-minute session of painting and collage.  All students are part of a short 'techniques' demonstration and then have about 40 minutes to work on a project at their individual pace.  While some make 2 things in that time and others might not finish 1 thing, they are all encouraged to explore the method and create their artwork with the help of the teaching artist who goes around to each student and helps them as necessary.

Um.  It doesn't really seem like he would be just right, not exactly right, really.  A teaching artist goes around and helps as necessary?  I don't think he could do any of it on his own, and I specifically said that he is *severely affected* by autism and that he was non-verbal and he sounds perfect?  Perfect for a class in which he watches a short techniques demonstration?  I'm tempted to sign up and drop him off and say GOOD LUCK and just come back in 90 minutes.  I don't even know.  Painting and collage?  Clay?  Last Sunday Anthony jumped off the couch onto the coffee table and bit through the middle of his tongue.  Should I tell them that?

I feel like he is the worst case that anyone has ever heard.  I feel like people have this idea about this Max-on-the-tv-show-Parenthood about autism and that's not our situation.  I feel like I say this all the time but that's not us!  That's not him!  And I feel like if they keep putting out false information about how 1 in 2 people have autism or whatever, people are going to have an unrealistic view of what autism is.

I don't know what to do about it, though.  I think the CDC is filled with a bunch of jerks, politically minded jerks but what can you do about it?  Obviously, nothing, not right now.  I will keep you posted on the art class and on ... oh, on everything.

Thursday, March 14, 2013


We are going insane with the insurance company who holds Anthony's policy.  I didn't know this before, but once a child with autism turns "school aged", BOY OH BOY do they come out of the woodwork to ask you, um, how's your child with autism doing?  Still has the autism, does he?  Does he want to take advantage of the FREE and PUBLIC education to which he is entitled?  No?  How come?  It says in this report from his school that he is "doing better" and that he is "communicating with pictures".  Sounds great!  Off to school with him, then!

To them I say GO TO HELL, SCUMBAGS.  Every six months we take Anthony to his developmental pediatrician, who PRESCRIBES ABA therapy for 40 hours a week.  The only place he can get ABA therapy, which is PRESCRIBED by a DOCTOR, is at the school where he is now.  If he goes to public school, they can't fill the prescription.  Why is this complicated?

Apparently, the insurance company wanted a "transition plan" included in their last evaluation from Anthony's school.  They didn't get one, so one is to be included in the next report.  What I want to know is why?  Why do we have to tell the insurance company about a transition plan?  Why isn't the prescription for ABA therapy enough?  The doctor prescribes ABA therapy, the ABA therapy center fulfills the prescription, we pay our ever increasing premium, and the insurance company pays the rest.  What the hell?  Why is it different because he has autism?  It's not.  It shouldn't be.

The letter that we got, stating that they were denying part of his plan, is signed by a doctor, a medical doctor.  She could be a freaking generalist, for all I know.  I'd like to know if she took the same oath that everyone else took, the one that mentions "do no harm".  I'd like to know how much money she is paid to sign off on letters like this.

I know.  I know he is a bad risk.  I know he is only covered because we live in Indiana, one of 34 states that has an autism mandate.  But you know what I say to insurance companies that are mad that they have to actual lose money on some kids?  TOO BAD.  I have been paying into medical insurance for all of my adult life, and my parents have paid into my health insurance before that.  I've NEVER been without medical insurance and I've never been sick, barely.  The only time I've been in the hospital is when I had my kids, which I suppose costs too much too, I guess I should have only had the recommended 1.3 kids or whatever.  But TOO BAD!  They are supposed to cover the costs of his care and I am supposed to pay the premiums.  Why is some asshole MD from the INSURANCE COMPANY saying what care he should get?  That is going to override his doctor?  It's unreal.

We have to keep trying and fighting but sometimes I am tired of it.  Most of the time I am tired of it.