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Where we are today

September 26, 2011


Well I would use this post as a ‘challenge how you view autism’ but unless you live under a rock, you realize that all autistic kids aren’t walking around flapping their hands.  That they look like every other kid and until you’re around them for awhile you don’t notice the quirks.


One of the hardest thing about this is that every kid displays autism differently.  There isn’t a cookie cutter that your kid fits into or not.  And for Rett,  most of these behaviors were normal at one point.  Its hard when its your oldest to know when ‘normal’ started pointing to something else.

This is Rett and his waterfall thing he loves to do.  Since starting research I’ve learned that this is a ‘stim’ for him. A way to self stimulate.  A way to relax.


Rett will stop if you say his name. And he will often pause and bring me a rock.  If Evie runs by with a toy he wants, he will stop and start chasing her instead. He also will go inside if its for something fun.. otherwise if we are out its hard to get him to come back in regardless of what he’s doing.  This is the one thing he does that was never ‘normal’.


This video shows how Rett can put the blocks together with me sitting right there but how his play falls apart.  At some point a ‘normal’ child start pretend play alone. They don’t need you anymore.  You are a fun bonus and you may push them to do pretend play they didn’t think about. But they aren’t just going to push cars around without you.  They will have some pretend play happening.


And these videos don’t really show anything except a cute little boy that we love.

This was about the time I started noticing differences.




The main thing that I’ve learned through  working with Rett is that the goal isn’t getting him to do these things.. he can do them. Its getting him to do them on his own.   And I’m clueless about that.


I was taking Rett to his first speech appointment today (which was worthless) and on the way Casting Crowns was on.   I always love their music.  ‘Because I’m not holding onto You but You’re holding onto me.’   And as I attempted to not cry since I actually put on mascara,  I realized that I am not alone. I also realized that this isn’t exactly a crisis.


Its hard to admit, but the waterfall thing.. the door thing.  I can’t tell you how many times I saw him do that. I can’t tell you how many times I thought of how unique, different my child was.  When he was quoting movies and dancing around and doing all these other autism things.. I was falling in love with him.  You cannot accept chunks of people, especially your children.  So if he’s autistic, he’s autistic. If he’s not, he’s not.  He’s still the same little boy he’s always been. He just needs some help.   And if I had to choose between Rett without autism being a different little boy then who he is today, then I choose autism.  Because there’s nothing about him I would change.  Although I wish life would have been easier for him, my job here is not to fix and not to heal him. It is to help.  My job is to surround him with loving, supportive people.  To not make him feel that we wish he were ‘different’. To feel accepted to find himself and figure things out along the way.  He was given to me to love and spoil and to build up.  And that’s what we’ll do.   I don’t pray for God to make Rett not autistic.  I pray to God to make me the mother that he needs.




2 Comments leave one →
  1. September 26, 2011 8:15 pm

    I love this post…it’s so true. You will always love your child, and he will always be ‘normal’ to you 🙂 I am praying for you and your family! You are a strong woman, and are definitely everything he needs.

  2. September 26, 2011 8:38 pm

    So beautifully written-so perfectly said. Your words gave me goosebumps! I agree 100% I love my Sam so much, but most of who he is, are things that aren’t “normal”. Without them, I don’t know who he would be! And I wouldn’t have him any other way!

    I loved the videos. It was fun to see you and hear your voice! We’ve been online friends for so long, but its fun to get to know a whole new side of you!

    I look forward to your blog posts, every day! Keep them coming!!!

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