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It happened today

January 16, 2013



It happened today.  One little sentence.  One little off hand remark.  One half promise.  One half hope.  Everything.  It was everything and nothing all at once.


I’ve said it before, autism doesn’t come with a guarantee.  You can pay a million dollars and get your kid fifty hours of therapy a week.  Sometimes it works, sometimes it doesn’t.  If a parent could buy their kid all better, they would. It doesn’t work that way.   I have done what I feel was best for Rett.  Sometimes it felt like enough. Sometimes it felt like it didn’t scratch the surface. This challenge we face together, Rett and us, it seems enormous.  I think about all the different ways it affects his life and the struggles he has that are chalked up to autism.  And it seems overwhelming.  Working on speaking, working on concepts, working on self control, working on sitting, working on paying attention, working working working working.  Seems like all we do is work.  And when we’re not working, I’m watching.  Watching for proof that its working.  That he’s progressing. That I’m doing the best for him.  Its exhausting.


But today.  It happened today.


Last week we started Rett’s speech eval with Miss Amanda.  All the questions with pictures to point at.  Put this on there and in there and next to you and under the table.  I see him go through the motions. Another test. But not just for him.  For me. Because how far he is behind is on me.  This boy wants to learn. He learns so fast. So if there is something he’s lacking, its just because we haven’t caught it and haven’t worked.  Its on me.  And so I watch him do the dance of the evaluation that we’ve done a million times before. He does well.  A lot better than he did for the public schools.  He knows Amanda.  She understands how to make him work.  Its not so stressful.  He does well.


But today.  Today we finished up the eval.  And at the end I was talking to her about things I noticed he was lacking. Because these tests give me ideas on what to tell ABA to work on.  When sometimes I have no idea, all we have to do is one of these evals and its right in my face what he lacks.  So I was talking to her about that.  And she said ‘You know I know this boy. I saw him for a few years but I don’t see him anymore. He’s in first grade now and really all he needs help with is his reading. He’s having a hard time grasping phonetic concepts.  He reminds me of Rett.’   This is the first time EVER that someone has been close to saying ‘you know what, he’s going to do great’.  Not ok, not fine, not good enough to squeak by.  The boy she talked about, she described him as smart.  She described him as someone with friends.  She described him as a child using problem solving skills and sticking up for himself.  She described him as my goal for Rett.


So if today was just going through the motions for you. If you ate breakfast, and fixed lunch, and wiped dirty baby butts and did some laundry and tried to catch a moment on Facebook to see if Cathy finally had her baby.  If it was mundane for you.  Just remember that everyday, someone is celebrating.   For someone, today was monumental.   And it happened for Rett today.   Today was his day.

2 Comments leave one →
  1. January 16, 2013 5:02 pm

    This brings tears to my eyes. I get it. I totally get it.

  2. Cecilee Hayes permalink
    January 17, 2013 3:06 am

    Bring on the Kleenex. I get it too. Yeah for Rett. We are in his corner cheering him on.

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