I wrote an email to our therapist and asked her to give us instruction in writing as we were feeling overwhelmed. She took a few minutes before therapy this past Monday and explained Ellie's diagnosis and therapy in more detail. She asked us to give her about 40 minutes of the hour with Ellie alone, then she brought us in the last 15 minutes to show us what they had worked on and added one home exercise, which she showed us how to do. I'm so glad I told her how we were feeling and thankful for the way she responded.
Some encouragements: 1. She licked food off her upper lip the other morning, which may seem like nothing, but she has never before even noticed when she had food on her face, and in addition could not even make her tongue touch her upper lip, let alone lick above the lip. 2. Due to a behavioral technique given by the therapist, screaming and yelling in the house has nearly ceased. 3. She's letting me brush her hair without having a fit if she holds a heavy doll while I brush.
One discouragement: She had her annual evaluation at the craniofacial clinic at the children's medical center (she has a minor cleft palate which they check annually), where about 7 doctors see her over the course of 1-2 hours. I asked if they would add a neurologist to the list since she was recently diagnosed with SPD. The speech pathologist said, "Let me be honest. Neurologists are all about the science, and SPD isn't very scientific, so if we did call one in, they probably wouldn't be very supportive. Alternatively, I recommend you have a neuropsych eval done when she's six or seven to evaluate any neuro delays." Not very scientific? How ignorant can doctors be? Fortunately, after what I've read in books, articles and on this forum, I wasn't terribly surprised by her reply. How are the rest of you doing?