Untangling Luke

I feel like someone handed me a tangled mess of yarn, ribbons, and string and said, "This is a fabulous work of art, some assembly required.  Oh, and there's no directions, sorry 'bout that."

I took Luke here for a speech evaluation.  Actually, I thought we were going to get more of a general eval, and some help with feeding therapy, but "there's no physician referral for feeding assessment or feeding therapy in the system."  Sigh.  

Paul may not appreciate it, but I'm thinking I've figured out why God made me so stubborn and forceful.  I absolutely could not navigate this labyrinth system of "help" without an iron backbone.  I honestly wonder how parents with mental or financial challenges get their special kids the services they need.  

So Luke had a speech assessment.

This is the therapist trying to get him to look at the pictures she's holding.  Yeah, not so much.  

Luke's scores ranged from the 0-3 month level to the 12 month level.  She said his abilities were "splintered" meaning that he didn't master all of the things on the 0-3 month level, but he could do some things on the 3-9 month level and even a couple of the 12 month milestones.  

The therapist is going to make a recommendation for a feeding assessment in her report, which I should get a copy of in about 2 weeks.  (Hmm, I've heard that before.  We should be getting the report from MIND Institute soon, shouldn't we?)  

The therapist feels that the key to unlocking Luke's speech (of which there is none) is "getting into his mouth."  Babies normally explore their world with their mouth.  Luke doesn't put anything into his mouth except his hands.  So we're going to try a Mesh Feeder and see what he thinks of that.  

She said he'll probably benefit from one of these:   Z-Vibe Oral Stimulator but not to buy one until he's actually IN therapy.  Also, she disagreed with the MIND Institute's assertion that he does NOT have sensory issues.  She feels the tapping things with the back of his fingertips IS a sensory thing.  

I have a feeling this won't be the last time professionals disagree about what's best for him.  In fact, I've been hoping that we get an actual diagnosis for him, but I've come to realize we may end up with PDD-NOS, the "catch all" dx for, "Yup, there's something not right, but hanged if we know what it is."  

Luke's next evaluation (a joint endeavor with Alta Regional and SCOE) is next week.  Can't wait to hear what they have to say.   

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