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They got it wrong, its not a sprint or a marathon

April 5, 2014

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When Rett got diagnosed, I felt like we needed to start every kind of therapy now.  He needed all the help he could get.  That if he went to enough speech. If I could get him ABA. If I could learn, educate, put into practice all these methods of therapy and help, that I could ‘save’ Rett.  And that’s totally normal.  You feel pressure to rush and hurry and HELP.  After watching your child and seeing all these unexplainable differences, it felt good to have a mission. To have a goal.  To have answers and options on what to do now.  And the doctors and other parents said ‘This isn’t a spring, its a marathon.’

 

In other words, slow down and pace yourself. Don’t burn yourself out. Don’t burn your kid out.  The finish line isn’t in sight.  Don’t overstress and lose 10 pounds and keep yourself up at night.  Because your runner is 2.5.  Its a long road.  Its a marathon.

 

And I believed that for awhile.  I believed that our finish line wasn’t a month away. Or six months. Or a year.  I believed our marathon led to 5. And just like the doctor that diagnosed us said, if I did enough, if I helped him enough, he would be fine.   And maybe it was me putting a number on my marathon at all, but as 5 approached and I saw the finish line, I realized that my idea of a marathon was an illusion.

 

This is not a sprint.  This is not a marathon.  This is a journey.  When you go on vacation, if all you focus on is when you’re leaving, how you’re going to get home, not missing the plane and keeping your suitcase neatly packed, you are going to miss out on the journey, the experience.  And that’s what this is.

 

I have learned to find the fun and interesting aspect of speech therapy and seeing how Rett’s brain works.  I have learned to be inventive in coming up with ways to get him to try new foods or respond well to new experiences.  We have found things  that work for us.

 

And when we got to 5, I expected to see a big finish line saying ‘ON LEVEL!!!!’ and that was all a pipe dream.  It does happen for some kids.  And I can’t help but admit that I’m jealous of that.   I’ve heard stories of children that were completely non verbal at 2.5 and at 5 they were acting typically. And I think, with Rett having so many skills and being so high functioning, wasn’t that a shorter journey for him?  Couldn’t we have obtained that?  But that’s not how this works.   And asking why and what if and why us doesn’t help anyone.  All that does is keep our suitcase packed and our eyes on the plane ticket instead of looking around and enjoying the experience.  Because like it or not, this is our life.  Autism isn’t going anywhere.

 

My long term, big marathon finish line has vanished in a poof of smoke.  And I had to come to terms over a course of many months as we approached it, that no matter what I do or how hard we work, a lot of this isn’t in our hands.  That Rett may not be ‘saved’ from autism.  And that was a scary reality.  But it is also freeing.  And its funny how after that happened, THEN we got more therapy and more resources and I’ve found a larger support group.  I’ve abandoned a time line.  I’ve abandoned a finish line.  I’m going to enjoy the journey and whatever this experience ends up being, at least I can say it came with a beautiful view and a lifetime of happy memories.

 

Day 4. Speech therapy, its not just about articulation

Day 3. Sensory processing disorder, different for every child

Day 2. Autism and anxiety, its real

Day 1. April is for AUTISM!

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