Sunday, August 18, 2013

ABC's of Autism - A

Today in church, the priest continued his talk about mystics by quoting the great Catherine of Siena, saying "Be who God meant you to be and you will set the world on fire".  And I was thinking, who does God want me to be?  I don't know - I mean, I do know.  I assume God wants me to be Anthony's mother, Mike's wife, Maria, Veronica, Felicity's mother.  Anthony is my first baby and he is definitely the one I will be caring for the longest, he is special needs and high needs  and whatever so I guess I am meant to be his mother, but I already knew that.  So I was thinking, I guess also maybe I'm meant to be the mother of a child with autism, because I am that too.  Today I saw this funny meme on Facebook and it's funny to me, because it's TRUE around here.

Anyway, I had this thought in church.  I have a lot of random thoughts in church because if I try not to think too much about what is happening to me, which is usually that Veronica or Maria are picking at me like a mother monkey, picking and picking and sometimes flopping in my lap or sometimes pulling up my clothes to 'see if I have a shirt on underneath my shirt'.  So, I was TRYING to concentrate on the homily but it was hard and eventually I was thinking, who does God want me to be?  I want to set the world on fire!  Anything would be better than this nonsense, being picked at and undressed in public.

So I thought I'd make this list of What I Know About Autism.  When Anthony was first diagnosed, I relied a lot on the Internet for camaraderie and I was always grateful to find it.  So maybe someone would be searching for some information, some real life information about autism, and maybe I could help them.  And maybe then I will be setting the world on fire!  We'll see.  I'm no Catherine of Siena, I am merely Joanne from Mt. Hope.

So.  A.  Anthony starts with A, Autism, ABA therapy.  I think I'll do ABA therapy.  Anthony goes to an ABA therapy center, meaning that he is in ABA therapy.  He is prescribed 40 hours per week of ABA therapy by his developmental pediatrician.  It's covered by insurance (in our case, although of course the insurance companies (scumbags) do NOT want to cover it but it should be covered by everyone) because it is a Surgeon General approved therapy for kids with autism.  Some, but not all, of Anthony's therapists have BCBA degrees.  BCBA stands for Board Certified Behavior Analysts.  Some of his Program Managers and some Directors at the center are certified as Masters or PhDs, too.

ABA stands for Applied Behavior Analysis, it used to be called Behavior Modification.  It is defined as a system of autism treatment (it's used for other treatment but mostly autism) based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences.

Anthony has been going to his therapy center since August?  September?  I can't remember but let's say August of 2009.  I remember because I was pregnant with Veronica when we went in to look at the place and also because she was a screaming MESS the whole way driving home.  We lived about 45 minutes away at the time and Oh, LORD It was AWFUL!  AWFUL!  Anyways, so it's been four years.  Before we found about it, Anthony was on the track to go to our local public school.  It was fine for developmental preschool but I was really worried about him going there as he got older.  He got pulled out of preschool for occupational and speech therapy and I liked that he got that, I liked most of his therapists.  But it definitely had a warehouse feel, I felt like they were just pushing kids through school and they would always talk at IEP meetings about how he was entitled to go to school under he turned 21 and then he'd get a certificate or something, you know, NOT a diploma.  UGH it was depressing.  I'm sure it's not true that the school was just warehousing special ed students, it just really felt that way in the beginning.

Anthony has come a long way, he is nearly toilet trained, he follows directions in a way that he never could before.  He has had some wonderful, loving therapists who I think really care about him.  They really respond to my questions and requests in a great way at his center.  There are only a few cons that I have with his ABA center.  One is that it's unbelievably expensive, we couldn't do it without insurance.  Mike's employer is self funded (the US government, ha ha boo hoo) so his insurance doesn't cover ABA therapy but Anthony has his own policy and that covers it.  Before we knew that would be possible, we were going to have to remortgage the house or get a line of credit or something.  The other con is that I am a big believer in acknowledging Anthony's many sensory processing issues and they are not, so much.  ABA is science-based, and I feel like they see OT and Anthony's sensory problems as kind of NOT science based.  One thing they worry about is the fact that there's no data on whether wearing a pressure vest actually HELPS a child with autism and sensory processing disorder.  But I think, as a parent, WHO CARES?  If he is happier wearing a pressure vest, if he sleeps better with a weighted blanket, who cares?  Why can't we just do it?  Anyway.  That is my one very small issue with my experience with ABA, but I think I'm like that because Anthony's sensory issues are so profound.

Anyway.  So that's A.  I am hoping to do a letter a day and be finished in less than four weeks but Lord only knows. I want to post more about Anthony, so much is going on, and maybe this is a good way to do it.

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