Wednesday, April 03, 2013


So April is Autism Awareness Month and in years past, I've posted facts about autism, interesting things about our life with Anthony, maybe answers to unspoken questions that friends and family have had, etc.  But this year I don't want to, as usual Facebook and the internet are ruining everything, ha!

AWARENESS ISN'T ENOUGH!, a friend of mine posted.  Autism is a terrible DISEASE, another friend said.  Um, I think awareness is a LOT, I think, and also I don't think autism is a disease.  I mean, I don't think it is a disease because it's NOT a disease.  I hate when people use words to mean what they want them to mean instead of what they actually mean.  I don't like when people call their girlfriends their wives, just because they've dated for a long time.  I don't like when people call their stepchildren their children, I don't like when people call their boyfriend's mother their mother in law - I just like to use words meaning their actual definitions, I think it makes it much easier to communicate.  It's like no one can use similes anymore - instead of saying "she is like a sister to me", they just skip to - she is my sister.  NO SHE'S NOT!  Anyway, my point is, even if you believe that your child's body is filled with JUNK, as some autism moms I see say, or even if YOU think autism is a disease, that doesn't mean it's true, even for you, much less for ME or MY SON.  Grrrr I am annoyed!

This story has been in the news and it's really upsetting.  It's upsetting because I don't understand the police, who are supposed to PROTECT people, being so rough on a person who clearly has Down Syndrome.  I mean, they told him to leave the movie theater but he couldn't and so they knock him to the ground?  How does that happen?  If I didn't have Anthony, I would read that story and be sad about it, I'd think of my cousin Patrick, who has Down Syndrome and who has been around my whole life.  I'd think I hope nothing like that ever happens to Patrick.  But I DO have Anthony and I think, oh no, what would happen if he were ever left alone?  If someone talked to him and he didn't answer?  Maybe he'd even grab them around the neck?  Then maybe they'd shoot him?  And then my head explodes and  I have to stop thinking about it.

So I think awareness might be enough for cops and for teachers and for insurance companies.  I was talking to my brother and sister in law, both of whom have worked in insurance for years, about how scared I was that Anthony's insurance company was going to stop paying for his ABA therapy.  I said what I don't understand is - Anthony sees a doctor, a developmental pediatrician, and the doctor writes a prescription for ABA therapy, and Anthony gets the ABA therapy and the insurance company pays for it.  I don't understand why this would change.  My brother and sister in law said, well, the insurance company might just want to get ANOTHER doctor to make a second opinion if Anthony really needs the therapy and then once THEIR doctor makes a decision, then they'll know if Anthony can still get ABA therapy or if he should go to public and free school.  This makes no sense to me - or rather, it does make sense, in that I think the insurance company doesn't want to pay for Anthony's ABA therapy anymore, and they are trying to find a way to not have to pay it.  My brother said hopefully you get a doctor with morals and I thought how is that possible?  A doctor that is hired by the insurance companies?  Is going to be a moral, upstanding person?  That doesn't compute for me.  I want to find the doctor who wrote us our most recent letter and strangle her, how dare she say that she knows, from reading a report on Anthony, that he will do well in public school?  But because she is unaware of autism and how it affects Anthony's and our lives, she just writes a letter and denies part of our claim and collects her paycheck.  Maybe she does it because she is so moral, but I doubt it.

Anyways.  I am aware of autism and I hope you are too.  The girls have been going to Anthony's school, have I said?  They go on Mondays as positive peer models or something and they are having a high old time.  They have a boyfriend there, the same one, his name is Jeremiah and he has gone there forever, he's maybe Anthony's age or a little younger.  Yesterday Veronica had an incident at school, some kid hit her in the face with a block and I knew right away who it was, even though they don't say.  It's a boy who is - well, he is ROUGH, I see his mother get incident reports a lot.  Nothing like this has ever happened and Veronica is fine so I am not too worried but Veronica told me later that she did NOT like BOYS!  Boys are too LUFF! she said, meaning rough.  I said I thought you guys liked Jeremiah and Maria said "we like all the boys at Anthony's school, even Anthony!".  It's funny to me that I am so worried about him grabbing us and that he'll eventually grab them and Maria thinks that Anthony is so gentle.  I mean, he is, with them, and I hope it lasts forever.  I hope that by going to Anthony's school, the girls are learning a lot about people with autism and that is acceptance, too, right?

I guess I am not a pioneer - I am not a Warrior Mother, I am just a mother.  I want my children to be treated fairly, I want them to get what they need to get through their young lives.  I can't be yelling at people on facebook about how Anthony is diseased, or full of junk, or whatever.  He's not full of junk. He doesn't have a disease.  He is a healthy person who has autism, he can't communicate well, he has major sensory problems, but diseased?  Junk-ridden?  I can't say that because it's not true.  Ha ha ha I have been wondering how to wrap this up and I just thought of something.  I want to say Anthony is not full of junk, but considering how every time Veronica goes to to the bathroom, Mike calls her Rotten Ass, I think maybe SHE is full of junk!  Ha!  She's full of something anyway!


Catherine said...

I'm glad to be back on the blogosphere again because I get to read your great blog again regularly! Your facebook posts have been tiding me over...

Joanne said...

Catherine, I am always glad to see you! Happy Easter Week!