We had Presley’s testing today. It was long, thorough and left us with out an answer, once again. I do however feel a more adequate assessment was done.
First they played with Presley. Getting her to engage and interact and mimic. Most of which she didn’t do. She was actually in a really good mood and got very attached to some toy balls which she wouldn’t drop for the rest of the assessment.
Next she went upstairs with the therapist to the large and well stocked OT room and played her heart out. Living it up on the swing and tent. Meanwhile, we answered questions about how she reacts to situations, what type of stimuli she prefers..etc.
Then we finally met with everyone in a large conference room to discuss the ‘diagnoses.’
During the first part there was a two way mirror, I was told therapist would be watching on the other side. I had no idea it was like 15 people back there watching us! They all had something to say. A lot of medical jargon was thrown around. In the end they gave her the ‘diagnosed differed’ outcome. Meaning, they don’t really know. While she has a lot of Autism characteristics, social she is more advanced and engaging than an autistic child. However, she has a lot of ‘red-flags’ (for instance, she had a spike in head growth around 16 months. Apparently a portion of autistic kids have the head growth spike at the same time.) One of the psychologists was leaning more towards autism, the other leaning more on the fence. So if she gets worse, stays the same or doesn’t improve much we are to see them in a year. When Presley is a three and half.
Its not that I’m disappointed. I don’t WANT my child to have autism, but I know that something isn’t right. I just want an answer.
They said that she was really unique, in the sense that they’ve never really seen a child with her ‘syndrome’ (my word for it) and of course they suggested that we have the genetic testing done. Which others have suggested, I’ve just strayed away from it. It makes sense to get it done, so I may actually finally break down and do it.
So I guess we’ll just continue to call it Presley’s Syndrome, because apparently it doesn’t have a name…other than developmentally delayed.