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The Balance

January 22, 2013

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During our autism journey I have went through many different types of feelings.  I went through anger, acceptance.     There were times I wanted him to not change.   And times when I hated autism.   And through this journey, not as a person who is autistic but as a person who is trying their best to support someone with autism I have went through many emotions, had many eye opening events, gone through lots of trials and fights and now, almost a year and a half later, although I am still very ‘new’ to this journey, I have figured out that its a mix.

Autism is awe and wonder at great memory abilities, at pure honest emotion.  Autism is anger and frustration when your child is behind and you try your damnedest to figure out how to help. Autism is everything all at once.

I see autism as I see any sort of personality.  We have labeled everyone as ‘types’.  You’re a type A or type B or type B-, whatever you are. I myself am a type A+ I’m pretty sure.  Anyway, you are special just like the other 1,000,000 type A’s out there.   For me, I’m a planner.  This is very convenient if say, you need to figure out a monthly meal plan.  I can figure out what to cook, what to get, where to go, coupon it all.  I’ve estimated the time it will take, the number of bags we need.  The only annoyance was when I forgot so much had to be flash frozen and the freezer was busy.  But its not so convenient whenever you are in a situation where spontaneous is more fun.  Or when the plans rely on so many other people that the planner isn’t appreciated.  But the thing is, I can’t just switch myself on and off.  I can’t be a planner when its convenient and not be a planner when its convenient.   I can pretend like I’m ok going with the flow. That the fact that the entire week’s events, meals and happenings aren’t planned is ok.  That I don’t want to chew my fingernails off thinking about WHAT THE HELL ARE WE EATING FOR BREAKFAST TOMORROW.   If you aren’t a planner, you don’t understand it.  Its ok.  I don’t understand not planning.

And for Rett and Evie, its the same.  They don’t get to have autism when its convenient and switch it off when its not.  No matter what therapy or help or treatment we get, Rett and Evie will forever have autism.  Forever.   Just as I’ve had to learn to go with the flow, so they will have to learn how to deal with sensory overload while maintaining a job or picking up social skills for dealing with a boss.  But the autism.  It won’t be gone.  And that’s ok.  Autism is part of my children. Its part of them that I both celebrate in its awesome abilities and curse when it holds them back.  But just like my planning comes in handy for any huge project, their autism comes in handy also.  Great memories, honesty, hearts of gold, hard work, determination, learning that taking the hard road sometimes takes you through much prettier scenery then does the easy one.  They take all this with them along with the autism. And I know, I am dealing with high functioning autism. It is NOT the same as low functioning.  I am not delusional.  This is just our journey with autism, it isn’t everyone’s.

And this is why I want to home school.  School was created for the masses.  And I think it is both silly and deluded to think that it can be custom tailored to EVERY.SINGLE.CHILD.  You’ve got one teacher and 22 active minds and you want her to juggle the.. 8 IEPS she’s got? I seriously had 8 children with an IEP the first year I taught.  EIGHT.  One with autism.   It would be nice. It would be very nice. A lot of things I dream up, like carefully planned meals and days and outings SOUND nice, but its not reality.  And for those who want to continue to fight for it, more power to yah! But its not for me.

I want my children to learn the skills that are difficult for them to pick up. I want them to learn this one on one with trained therapist.  I want them also to accept themselves.  To feel like important, loved little people.  I don’t want them to hate their diagnosis or not feel comfortable in their skin.  Because another part of high functioning autism is that my children will be aware of it.   I don’t want them to hear ‘sit still, sit down, be quiet, be interested in this’ or even worse as their children’s ears perceive it ‘you are not enough, you were made wrong, you are bad’.

I can’t speak for every child or for every parent or for every circumstance, but my mission statement for my children is to be taught to deal with life without feeling like they are losing themselves to conformity.   To celebrate interests and strengths and not dwell on things we aren’t good at or not interested in.

It is a big, monumental task that we have before us. To cultivate these awesome humans.  To show them things and for them to develop interests and passions.   And for them to like themselves for who they are.  I mean, I think they are pretty awesome.  Pretty darn awesome.

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One Comment leave one →
  1. January 23, 2013 8:07 pm

    “And for those who want to continue to fight for it, more power to yah! But its not for me.”

    Sitting here nodding my head in agreement!

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