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When the road is long

December 31, 2014


There was a time when almost everyday or at least every week I had some exciting story about something Rett could do.  New words, new skills, new concepts.  It was fast and furious.  And at some point.. that stopped.  I’m not saying that Rett is not making progress.  But progress comes slowly.  We’ve been working on some concepts now for a year.  And we’re no closer than we were when we started.  In fact some of them were mastered, now are lost again.  Its one step forward, thirty thousand steps back.

The hours we spent in speech therapy.  The money spent.  It all looms over my head. Was it worth it? Did it do anything?  Sometimes I catch glimpses of it though.  He’ll say something and I’ll think back to oh so long ago when Miss Amanda introduced that and we pounded it into his head. Now he just does it and it goes unnoticed.  How wonderful it is.

It is hard to continue to upward climb of the mountain and only have a tiny glimpse of what’s at the top.  It hard to go and hear the same things over and over. We’re still working on pronouns. Working on pronouns.  Pronouns. Pronouns. Did I mention the freaking pronouns? Therapy session 8234345346 working on pronouns.  And he did have his pronouns. Now they are gone.   And I’m too worried that if I start correcting him, his anxiety will make it impossible for him to use the pronouns because he’s so anxious about being corrected.  So whatever.  The kid may go to college with lack of proper pronouns.   I’m assuming once he can read, they will come.  One day he goes to speech, he can do multiple step directions with multiple descriptions. Get the small blue circle then get the big green star.   Next time, he can’t do it all.  How do you know what to work on?

I have taken a huge step back from my therapy involvement with Rett.  For my own mental health. For all of our mental health.  I have given over some of that responsibility to his therapist.  And yes I still want to work on things with him. But honestly the time is so little with everything else we’re working on in home school.  He can only maintain focus and attention for so long.  And I have a lot on my own plate to teach him.

When I’m not overwhelmed.  When I don’t feel like I’m drowning in the sea of ‘things I need to help Rett with so he can catch up’.  I think it was all worth it. The hours spent driving in the car. The hours spent in speech.  The hours outside of speech practicing.  As a family we are committed to Rett’s future.  If only the climb wasn’t so slow at times.

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