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.  :)

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