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Finding the Positive

April 30, 2013

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Today is the last day of Autism Awareness/Acceptance Month.  I found a little challenge where they were having parents and Autistics post positive things about autism.  And of course, I wanted to take part. Because every challenge like that speaks to me.  And if it lasts under 2 months, I can swing it because I’ve decided that’s my attention span.   But in the end I can’t commit to actually joining in on their challenge.  Because I’m not all rainbows and sunshine yet.  So this is my post that no one but my friends and followers will read.   And I’m ok with it.

 

When your child gets diagnosed with autism, you look at your husband with your eyes wide and you think ‘how did this happen’ ‘where did this come from’ ‘why us’ ‘why him’ ‘what now’.  And you examine yourself closely.  After filling out 2000000000  checklists to see ‘is your child INDEED autistic’ I know they have a lot lacking.  They tend to focus on CERTAIN sensory things, especially those with sensory avoiding but leave out a lot of seeking.  One questionnaire for Evie asked if she liked to watch bright or spinning objects (visual seeking) but left out ‘do you like to smell everything you come in contact with’.    It was trying to see if she was sensory seeking but it left her out.   And when I started taking the CONCEPTS behind the questionnaires I had to admit, I saw a lot of myself there.

 

When I was little I toe walked. My grandmother wanted my mom to take me to the doctor because she was afraid I’d end up in a wheelchair. I’m not sure why but there you go.  I toe walked everywhere because when I was little I was barefoot a lot.  Even today if I’m barefoot or wearing light shoes (flip flops or sandals) I toe walk.   All my life people have commented on it and I get to tell the story of how I’ve always walked on my tippy toes even as a little girl and I embraced this part of me as special, unique and cute.  A bit of babyhood that I kept with me, that I got to experience.  I never was embarrassed.  My kids are similar toe walkers.  I will never work on toe walking with them because I myself do it and I know why.  Its enjoyable.

When I was little my sense of smell was so strong I would announce to my mom that people’s houses smelled funny. Even though nobody else noticed.  And I couldn’t go down the laundry aisle because all the smells overwhelmed me and it hurt.  My mom would leave me in the cart at the end and go down or I’d wait for her when I was older.  The smells were so overwhelming to me I have SEVERAL memories as a young child of holding my breath to go get something that my mom needed in the aisle, seeing if I could hold it all the way back.  Luckily now almost all the detergent is in bottles so that aisle doesn’t bother me as much.  Or my senses have dulled since I was a kid.

I still do better with one friend rather than many.  I often don’t know what to say in large groups or I seem to say the wrong thing.  I ‘feel’ the difference but I have no idea what to do about it.   I have made great friends but I know I’m different from other people when I look at their life and how they bond with others.  I don’t get that in my life.  I’m not sure why.

 

Am I autistic?  I’m not sure.  Do I have a LOT of autistic qualities, yes.   When I  emailed another Aspie woman and told her I still toe walk she said that was just ridiculous and she couldn’t believe I hadn’t signed myself up to be diagnosed.  What would it matter.

 

My friend Q brought up the spectrum of humans and that spoke to me.  That really we are all on the spectrum somewhere. With our quirks, differences and challenges we all lie somewhere between autistic, close to autistic or far from autistic.   At least through my view of the world that’s how it works.  In a lot of ways, I hope I am because I was able to hold down a job, have a family, do what I wanted to do.  Others don’t always understand or accept or ‘get’ me.  I know that.  I chose a husband who does.  He doesn’t want me to be more social or make more friends or go to more parties or host more get togethers.  Because he doesn’t want to either.   He gets it.  I don’t feel inadequate or off around him.  Two peas in an unsocial pod.

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On this blog that’s hosting the positivity challenge (am I being positive yet?) I found some articles written by autistic adults.  These of course are very interesting as they can look back to when they were my children’s ages and tell me if these things we do work or hurt or add insight to what the hell are we supposed to do in this situation.  I like insight.   I found some articles on ABA and I wonder if the way I think about ABA is off.

 

When I was in high school, you had to take two years of a foreign language.   I knew I was going to suck at it.  I could NOT memorize languages. No matter how much I told my brain they were important and I valued the information, it wouldn’t stick.  I tried spanish in middle school. In intermediate high I took Latin I and II and I took French.   I almost failed everything but Latin.  You see the way that they teach Latin is very stair stepped. I couldn’t learn with all the language just thrown at me. My brain has issues organizing it into a way that it can keep track and hold it for future reference.  But Latin they introduced these verbs and you worked with them and these nouns and you worked with them and then you put them together.  It was repetitive, it was organized, it was precise. My brain loved it. I went on to take Latin I and II again in college because I knew I could ace them. I got A’s in both.  You put me in a spanish class and I.will.fail.

 

To me, ABA is Latin class.  It is precise, it is repetitive, it is organized.  For me ABA is NOT about behavior or doing what he’s asked or whatever, its about being able to ‘do’ the program.  ABA has a way of finding chunks of information that a typical child would just learn and working on them with Rett.  One example is Rett didn’t understand what professions were. Who helps you when you’re sick? Who cleans your teeth?  He had no idea.   He has to be directly taught.  ABA just teaches a question and response.  You’d think it would just be parroted.  Maybe for some kids it is, I’m not sure I can only speak for my kid.  But for Rett something about doing that really makes connections in his brain and he is able to transfer that knowledge to inferencing in speech class and also pretend play.  He’s started playing airport.  He never could before because he didn’t understand what an airport was.  Its not an intellect issue. Its just like my brain.  I can’t pick up spanish but I can Latin. Is Latin easier?  Am I not smart enough to learn spanish? Or is it just that my brain is wired to be able to learn the way the language is taught?

 

The more I read about autistic adults and the things they struggle with, the more confused I get.  The less I understand what I should do and how I should raise these kids.

 

And now, without further ado, my positive autism post.  Autism has taught me to take a chance on hope. Because my 4 year old can ride a bike with training wheels.  With no hands at times.   Things that I thought might not be possible continue to happen.   The horizon on ‘how far can he go’ continues to push out ahead of him.  And I’d be lying if I said its not exciting to watch him grow and achieve.  Autism will not be a list of can nots on a list of his personality flaws.  It does bring its challenges but learning to work with them and not against them makes us a better family.  It makes us a stronger family.  People may not always get him or understand him or accept him.   But we always will.

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