Monday, April 14, 2014

ABCs of Autism - R

R is for Regression, I guess.  It's hard to say if Anthony is regressing because maybe it's regression and maybe things just suck right now.  He is definitely having a regression with toilet training.  Yesterday he was outside several times and just - went in his pants, not to put too fine a point on it.  Maybe it's because he is just having a high old time outside and doesn't want to come in, maybe he thinks the heck with it, I have been indoors for six straight months, I'm not going in now!  But if that's what is happening, it's still a regression of sorts because in the past, I think he would know to come in.

He is also having tantrums like he used to, meltdowns, whatever we want to call them, and he is grabbing the heck out of us.  Mike says, and I agree, that we have to just think about what's happening right now and not get weighed down with the future.  If he gets bigger and still grabs me like this, I think, he could really hurt me! But Mike says there is no point in thinking about the future because maybe he'll stop doing it, and he is right.

My cousin Agnes posted this great thing on Facebook the other day.  Here it is:

In essay titled "The trick of Life" -NY Times 4/6, Akhil Sharma wrote while going thru a breakdown: "I began to pray for the people passing by. I prayed for the nanny pushing a stroller. I prayed for the young woman jogging by in spandex....I prayed that each of them got the same things I wanted for myself: that they have good health, peace of mind, financial security. By focusing on others and their needs, my own problems seemed less unique and somehow, less pressing..." 

I thought it was just brilliant, it really spoke to me, and I told her that.  I am always praying for myself, nearly constantly, in the middle of all my breakdowns, and maybe that's not the way to do it!  Now as I lay on the floor, where I've dropped so that Anthony doesn't tear my shirt as he pulls me, I don't pray for myself, like I normally would.  Normally, I'd say please get me out of this hellhole or something, ha!  Right now, Felicity is screaming and yelling at me, for example, because she does or does not want me to put a backpack on her shoulders, and instead of feeling sorry for myself and praying for myself, I am praying that she will stop being such a jerk, ha!

Seriously, I am just filling my time formerly spent praying for myself and praying for Anthony.  Praying for the people around us, who might want to give us a dirty look in church or even just stare too long.  I'm praying for the parents who are so hell bent on finding out WHY their kid got autism that they get an answer, or that they give up and just focus on making their lives better.  I pray for Mike and for the other kids.  It really does make me feel more a part of the world, less lonely.  Anyway, it turns out it was foolhardy for me to think that I could ever sit for two seconds of my life and do something but Anthony is having a regression and that starts with R and now I am finished with R the end.

Monday, April 07, 2014

April is Autism Awareness Month

April is Autism Awareness Month and people are making me mad about it.  I feel like most people are great about it, truly wanting to be more aware of how they can help people with autism, families with Autism, etc.  My cousin Bridget posted a cute picture of her and her son Liam wearing blue for World Autism Day.  I have friends who are moms of kids with autism who post facts about autism, Anthony's school is doing a blog post a day ( I wrote one ) about it, these are all good things.  Not so good things include the ongoing love for Autism Speaks, a corporation that I really think is more damaging than good for people with autism, and just people in general.  Also, it seems like Autism Awareness Month sometimes turns into Vaccines Awareness Month and it drives me crazy.

Here's what might happen - a Facebook friend of mine might post something about vaccines.  Sometimes, the article has a disgusting picture with it, I won't post an example, because it's DISGUSTING, but like a child covered in welts and bumps, with a headline about how mumps is making a comeback.  It's so patronizing and insulting because I don't think that's what mumps looks like and also?, don't try and scare me with pictures!  I can't unsee those things!  Anyway, so the friend posts it and then someone else will comment that the government can't be trusted, or they don't want their child getting AUTISM and this is what really makes me mad.  Because while I agree that the government can't be trusted, I really feel like my pediatrician can be trusted, and if I didn't feel like he could be, then I think I should get a new pediatrician!  But what kills me is that there are people who compare having mumps or measles or whooping cough with having autism.  Having a disease which can KILL their child with having autism.  The mind boggles.

Also what might happen is an Autism Advocacy group I follow on Facebook (The Thinking Person's Guide to Autism) might post an article about how they are not supporting Chili's Restaurant supporting some Autism group which mentions that maybe vaccines cause autism.  The advocacy group says that any comments which say that vaccines DO cause autism will be deleted, and then so many people get SO MAD and what about their RIGHTS?, they ask, is this SOVIET RUSSIA, or AMERICA? and I think go to hell, dummies!  Why should you get to keep perpetrating this MYTH of vaccines causing autism on an autism advocacy page?

I have Facebook friends who believe that vaccines cause their child to have autism.  One friend posts pictures of her infant child making eye contact, saying that he didn't have autism then!  Ugh, it drives me crazy, but what can I do?  I can't post and say, um, yeah he did, because I don't really know and it's none of my business but man, I wish she would shut up about it.  They post about how much they HATE autism and they don't want to call it Autism Awareness Month but Autism ACTION Month.  They want to take action and get rid of autism, because they hate it!  And I think, I don't know what kind of wizards they are but I can't separate autism from Anthony enough to abolish it without thinking that Anthony might go, too.

I try and be patient with people -  I am lucky enough to have four kids, so I have a very clear example of how four kids with the same parents can have the same vaccines and if only one out of that four has autism, maybe vaccines didn't cause it?  Also, if maybe another child out of the four is kind of a weirdo, sensory-wise, maybe that can prove to me that genetics might be a cause of autism.  I read another comment from a 'scientist' at Autism Speaks which said that 'probably' the mother's age might have something to do with autism and I mean, I'm no scientist but do we say probably in science a lot?  Without any actual facts to back it up?  Because if we do than my scientific statement is that since I was the youngest when I had Anthony and he is the only one with autism, I 'probably' disagree with that 'scientist's' theory about the old moms.  But anyway sometimes when people have only one child and that one child has autism, maybe it's easier to blame vaccines, since they have no built in focus group like me.  I know it's really hard to have a child with autism, I want someone to blame sometimes too!  But then I think - and this is the KEY - I think what good does it do Anthony if I find someone to blame?  In what way does that help him or enrich his life?  And then I think, it doesn't, not one bit and then I forget it.

Anyway.  Here we are in April again, Autism Awareness Month.  Funnily enough (ha ha boo hoo) Anthony is having a VERY hard April so far.  He has had two terrible weekends in a row, but I am just hoping it's the darkness before the dawn.  I dream someday maybe the mud in the back yard will clear up and we can go outside and get fresh air and be happier.  It's been a long winter.