|Malachi tries to fend off Jaden's attempts to steal his cheerios.|
The exchanges with the specialists were amiable and I answered their questions to the best of my ability. It still took me asking them to explain the findings of their evaluation for them to do so, but I was expecting that, so I wasn't angry about it like the last few times.
The speech-language pathologist said Malachi was on-track in his babbling, but that his play and comprehension seemed a little more like a 6 or 9 month old's. We both felt that a big part of this delay is his inability to show us what he can do. (Remember how I said, It's all connected?) For example, I know that Jaden can understand his name and simple commands because when he wanders over to something he's not supposed to touch I say: "Jaden?" He looks at me. "Don't touch." He looks dejected and inches away. Malachi isn't really capable of touching anything he's not supposed to, so I never need to give him a command or get his attention with his name. Of course, I do say pleasant things like "Hi, Malachi!" And he looks at me. And: "Want this?" and he grabs for it. But it's not as clear-cut as my interactions with Jaden. It's possible that he is simply looking at me when I call his name because he looks at me when I say just about anything. It's possible that he's grabbing for the toy because my body language and facial expressions indicate that's what he should do.
The thing I want more than anything is for Malachi to be able to speak normally. I've heard that adults with CP are most frustrated with their inability to speak clearly and/or perform fine motor functions, such as buttoning buttons. But ever since he was diagnosed with a swallowing disorder I've realized that it's extremely likely that he will have trouble speaking. So I was happy to hear the SLP's diagnosis and when I asked her if she thought the feeding problems will interfere with speech she essentially said: "Not yet." Which is better than yes. But not much.
We had a brief break, just enough time to tweet a bit and hand Malachi a Baby Mum-Mum to snack on, when the developmental pediatrician came in. He did some now-familiar tests, such as feeling the tightness of his muscles, checking his reflexes, standing him up, etc. Just like last time, he finished his evaluation with little to no explanation and asked if I had any questions. While last time I felt enraged, this time I was simply bemused.
I asked if he could explain his tests in more detail and what specifically he found. He said he was even more certain than last time that Malachi has non-spastic or extrapyramidal cerebral palsy and that this is "reassuring." He said that his ankles and hips look fine; that his legs have some tightness but that they can be stretched, which is good; that his head control is better, his hands are more open and functional and he stands better on his feet than before. He said things are "moving in a good direction."
These are all things we already knew.
Whenever I asked a question about treatment — such as courses of therapy or the need for special shoes — he said little, mostly preferring to defer to our physical therapist.
I told him a little about the Anat Baniel Method we're doing, which he recognized as Feldenkrais. He was politely interested but certainly didn't seem like he would check it out and maybe tell his other patients about it. I mentioned that we are doing conventional physical therapy only about three to four time per month now. He didn't seem concerned about that or mention research in the last few years that says that intensive therapy is vastly more effective in brain injury victims.
Overall the take-away advice from both the SLP and the developmental pediatrician was: "Keep doing what you're doing."
For some reason, they don't seem to notice or mind that almost nothing we're doing has come from them, the "experts."
"Keep doing what you're doing."
Yep. We will.
|Malachi's nap attack after the appointment.|