Week 49: Stillness with changes

When Logan was diagnosed with autism in September 2013, we were told he was really high-functioning.  Test again in a year, his evaluation team said–something might change.  And a lot of things did, actually, change–Logan’s diet has completely changed–no gluten, no casein, no sugar, no soy, no artificial dyes, and heavy probiotics–and diagnosis measures for labeling someone as autistic have greatly changed, too, from DSM-IV to DSM-V.  It now seems like might be a little harder to receive a diagnosis of autism.  In fact, the evaluation team at Fraser told us Logan actually might not qualify under DSM-V; it was hard to say.  

A few weeks ago, our name came up on the wait list for the University of Minnesota Autism Clinic, a wait list we’d been on so long, I had completely forgotten about it.  And even though we didn’t really need a diagnosis from them anymore, we decided it’d be interesting to hear a second opinion, especially almost a year after those two really big changes.  Maybe–maybe–with all the changes, we would hear that the diagnosis would be gone; Logan would no longer have autism.

Logan brings chicken, asparagus, quinoa and green beans to daycare for lunch.

Logan brings chicken, asparagus, quinoa and green beans to daycare for lunch.

Of course, that was silly, wishful thinking.  The results still came back the same.

Well, basically the same.  Logan’s diagnosis of PDD-NOS went away (a result of the switch DSM-V, as there is no “PDD-NOS” anymore), and now he is diagnosed with simply autism.  I know that PDD-NOS wasn’t necessarily a better label than autism, and it wasn’t anything I shouldn’t have expected, but it still felt like a letdown all the same.

My son has autism.  Still.

After all the changes we’d gone through.  After all the maturing he’d seemed to do.  And all the progress he’d seemed to make: no longer needing speech therapy, catching up to his peers with fine-motor skills through OT sessions, learning to take deep breaths to calm himself when he approached meltdown state, and recently wanting to make friends and invite them over to play.  Still he struggles with eye contact.  Still he waves his fork and spoon in front of his eyes at dinner, intensely focused on the movement.  Still he will let out little scream bursts when excited; still he’ll slip into baby talk mode; still he’ll fail to follow directions as complicated as, “get dressed, please.”  

I’d changed my cleaning routine to eliminate as many chemicals as I could from our house.  I changed all our dishware from plastic, kid-proof plates and cups to glass ones.  We changed his nightly bath routine, adding Epsom salts.  We’ve changed so much, but still, nothing’s really changed.  Still, the a-word hangs next to his name on a slip of paper.

And still, I am trying to be optimistic, but it gets hard, especially when I read scary stories in the news about the transition to adulthood for people with autism.  They drive me to keep trying to change things, things I can fix, things I can improve for my son.  Because sometimes, they make my body still–paralyzed–with fear.

So still, we are pushing on with as close as we can get to the BEDROK diet.

Feeling: Nervous

Trying out a new food

Trying out a new food

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4 responses to “Week 49: Stillness with changes

  1. Trisha

    Oh Laura, I have tears in my eyes. I wish I knew the right things to say. Logan is a blessing and he is so blessed to have parents like you and Jason that are willing to do so much including all those amazingly huge changes. He is so beautiful, I love the the picture of him looking at his food on his fork. He is brave and so are you! Keep going girl, we believe in you!

  2. Never give up….you are wonderful parents…….

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